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We are glad you are interested in registering!

Below is what you need to know to fully understand your participation. Please read each requirement of participation before agreeing and signing the consent form. Presently only US residents can participate in research studies.

Would you like to receive invitations to participate in research studies?

We’ll notify you through email or the PatientPower app when you may be eligible for a study. All of them are voluntary, and some may offer compensation as a thank you for your time. You can opt out of these study invitation at any time.

You will occasionally receive invitations to participate in research studies

We encourage you to complete health assessments in the PatientSpot app at least once a month

Every month, we’ll remind you to report your symptom severity by taking PatientSpot health assessments. You can opt out of these monthly reminders at any time. These assessments will ask you about your pain, fatigue, sleep, and other symptoms. Your answers will help our research team understand how patients are doing over time and see trends in medications and symptoms. Based on the information you provide including conditions, medications and demographics you may also be eligible for more studies.

You’ll be asked to provide personal information.

During this registration process, we’ll ask you for personal information like your date of birth, ethnicity, and diagnosis. Many of our research studies have specific requirements, like a particular diagnosis or age range. Providing this information allows us to only send you studies you’re likely eligible for. It also helps our researchers understand the prevalence of chronic diseases and related conditions among different demographic populations.

Your data will be stored in the secure PatientSpot patient research registry.

The personal and health information that you submit through this registration process, research studies, and the app will be kept indefinitely in the PatientSpot registry. Your information will only be used to better understand how patients are affected by their conditions and treatments. The only people who have access to the PatientSpot registry and your information are authorized researchers. A more detailed list can be found in the Informed Consent Document.

Joining and participating in PatientSpot is free and voluntary.

There is no cost for joining and participating. You may stop at any time. We thank you for your interest in research and in helping us learn how to improve the lives of people living with chronic diseases and related conditions!

Review full consent form

We’ll notify you through email or the PatientSpot app when you may be eligible for a study. All of them are voluntary, and some may offer compensation as a thank you for your time. You can opt out of these study invitations at any time.

Informed Consent Document

2/7/2017 Version 2.0

Sponsor / Study Title:	Global Healthy Living Foundation with initial start-up funding from PCORI (the Patient Centered Outcomes Research Institute). PCORI receives its funding, and in turn, issues contract awards to patient organizations or universities. PCORI'S funding was established by Congress through the Patient Protection and Affordable Care Act of 2010 / “PatientSpot Research Registry”
Protocol Number:	PatientSpot
Principal Investigator: (Study Doctor)	Shilpa Venkatachalam, PhD (Director of Patient-Centered Operations & Ethical Oversight, Global Healthy Living Foundation)
Telephone:	845-348-0400
Additional Contact(s): (Study Staff)	Sub Investigators include: Jeffrey Curtis, MD, MS, MPH (University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology)

What is the purpose of PatientSpot?
We are asking you to take part in the PatientSpot research registry. As explained in more detail below, a registry is a collection of information about individuals, often those who have a specific diagnosis or condition, and the individuals voluntarily share information about themselves to the Registry.
The purpose of this Registry is to use the PatientSpot mobile and web-based computer application (the App) to collect information from patients like you who have been diagnosed by a physician and are living with chronic conditions.
The information collected in this Registry study:
1) May be used by you to help track your health and how you are feeling. You can use your username and password to access your information through the mobile PatientSpot App on your smartphone, or on the web at www.patientspot.org
2) Will be stored indefinitely (forever) and will be used for future research studies unless you request to withdraw from the Registry or until the Registry is permanently closed. The information will be used by researchers to help them gain insight about patient experiences with medications, outcomes, and quality of life. Also, in the future, scientists may want to study new treatments, and may wish to invite patients to join a clinical trial. The Registry can help interested participants to connect with these scientists. (It will be your voluntary decision whether to participate in a clinical trial.)
3) Will be used to evaluate the effectiveness of use and patient satisfaction with the mobile PatientSpot App. The researchers will also use information collected during this research to continuously build a set of mobile and internet based applications to help patients better track their health.
The Global Healthy Living Foundation (GHLF) is not a health care provider. The intended use of the app is not for the diagnosis of a disease or the cure, mitigation, treatment, or prevention of disease, nor is it intended to affect the structure or any function of the human body. Instead, during your participation in the registry, information will be collected about you during your use of the App and through surveys and questionnaires sent to you to complete. In addition to the information that you enter into these "survey tools," GHLF would also like your permission to collect information from your electronic health records that are available at some clinical laboratories, with health care providers and health care systems and pharmacies and/or electronic health information that is available from your health insurance company or plan. With your permission, we also want to be able to collect information that you can share with us from your own health devices or trackers, like a Fitbit or Jawbone, and information from your phone itself (your geolocation and associated information). Finally, we may share the information you provide with your health care provider.
Not all of these features are currently available with the App. However, we will alert you throughout your participation in the Registry when the potential uses of the App are expanded, so that you can opt to participate in those uses if you voluntarily choose to do so. We plan to combine the electronic data with the other information you voluntarily provide to us and store it in the Registry.
You will be asked to sign this electronic consent form to be part of the Registry, and this consent form combines a consent to participate in the Registry with a Health Insurance Portability and Accountability Act (“HIPAA”) authorization and is consistent with applicable state law. Please note that the Registry is only intended at this time for residents of the United States and United States territories who are age of majority for their respective states to participate).
What is a research registry?
A patient research registry is a place to store detailed information about patients with a specific disease or condition. In this case, the PatientSpot Registry is for patients with chronic disease. Establishing the Registry addresses many important needs. First, scientists studying these conditions need accurate information directly from patients to understand how people are affected by a condition and its treatments. The Registry will use already-collected information for future research studies to better understand how different treatments lead to better or worse outcomes for chronic illness patients. If you have any cultural or religious beliefs or preferences that prohibit certain types of future research, please discuss these with the investigator before agreeing to participate in the Registry What will I be asked to do?
You may have heard about the Registry in several different ways, for example, through the GHLF Facebook page or website, a flyer at your doctor’s office, through participation in another patient research registry, or at a community outreach event. You can discuss the Registry with one of the study investigators, Shilpa Venkatachalam, at the Global Healthy Living Foundation (GHLF) at 1-845-348-0400 or email at [email protected] if you have any questions.
Once you have enrolled in the Registry, we would like you to complete some online surveys in which you will report data about your health. In the future there may be additional surveys that we will ask you to answer. All the surveys are optional. You can choose to NOT complete the surveys and still participate in the Registry.
You may or may not be asked to participate in future research studies. In some of the future research studies, the researchers may ask that you permit us to obtain test results of blood specimens as ordered by your doctor or self-requested by you from a laboratory (as permitted by state law), to gather more information about chronic diseases. You will be asked to sign a new and separate informed consent for any study or supplemental research information that involves blood tests or blood collection. The amount of blood sample needed will depend on the type of laboratory test you are voluntarily undergoing. You will always be asked if you would like to participate in these additional projects and you do not have to participate in the blood collection or testing projects to stay in the Registry. You may also in the future be asked if you would like to be contacted by other researchers about participating in studies or clinical trials.
What types of information will be collected in the Registry?
1) Health-Related Data: Through surveys that capture information about how you are doing, pain you experience, mobility, and similar types of data, you will be able to better track your health and provide information to support research that helps others with your same health condition. Personal Information: We need to know some information about you to support patient research and to build tools and offer useful resources to you. For example, we are asking for your name, date of birth, mailing address, email address, etc.
2) Personal Health Information: The information you enter into the Registry will be stored in secure servers located within Amazon Web Services’ (AWS) data centers, and made available to our research partners, including Dr. Jeff Curtis, and also his research team at the University of Alabama at Birmingham Division of Clinical Immunology and Rheumatology (UAB) and at Illumination Health, the largest rheumatology data repository that utilizes real-world data to drive course corrections and improve outcomes across the entire patient journey. Dr. Jeff Curtis is a researcher working with the study investigator Shilpa Venkatachalam. As noted above, your information may be supplemented by other sources of information that you permit us to receive, such as health plan data about medication use, laboratory results, and healthcare utilization and information that you choose to share with us from your own fitness trackers and other personal wearable devices.
3) Electronic or Other Data Collection: We want to help customize your experience and maximize the efficiency of your time using the App. We therefore would like to capture location information and your web location (Internet Protocol address) from the mobile device on which you run the App. You can shut the location tracker off if you don't want to allow this. In addition, we would gather other information that helps us customize the electronic tools we are providing to better match your preferences and screen size, such as the type of online browser you use (e.g., Safari, Chrome, Explorer, Mozilla), your preferred language, and the use of "cookies" that store information on your browser. This information may be used for arranging the mobile application in the most user-friendly way, customizing your browsing experience and keeping track of the preferences of individuals using the App.
Why am I being asked for this information?
Your personal identifying information may be used to keep track of and gather additional information for you and our research partners about your health status. Here are examples of how this information might be used.
Future Research Surveys and Study Updates: Occasionally you may be contacted by email, the Internet, mail or phone to answer questions about your health condition, its treatment, or other aspects of your health. These data will be used to supplement information in the Registry and collected on the App. Your decision to participate in this future research and answer survey questions is completely voluntary.
Supplemental Data: Your health information may be supplemented from other external databases like your health plan data, administrative claims, laboratory, medical records, other patient-reported outcomes, pharmacy data, and your own fitness trackers and other personal wearable devices. You cannot participate in this study if you do not allow the researchers to collect information from your insurance companies, health plans, laboratories, doctors, and other healthcare providers and healthcare systems. These data will be used to supplement information in the Registry. These data will only be accessed by persons authorized to do so, and information stored within them is not available to the general public. Please note that this Supplemental Data, when requested, is not intended to seek HIV, AIDS, mental health, substance abuse, or genetic information about you.
Follow-up Information: If you are unable to answer questions for yourself, we would like to contact a person you have designated who could answer questions for you, such as an emergency contact or responsible party. We plan to access this person’s contact information through information in your electronic health record (if/when this information is available to the researchers). This may include obtaining information about your cause of death if you should pass away while still a member of the Registry. This would be similar to a personal representative under HIPAA, such as your spouse or a health care agent designated by you. It is your voluntary decision whether to designate someone for GHLF to contact if you are not able to answer questions yourself.
Will my personal information be shared with anyone?
Based on your permission, we may request additional data about you from sources such as laboratories, pharmacies, your healthcare providers, health care systems, or your health insurance company. To make sure we are obtaining your information and not someone else’s information, we may share some of your personally identifying information to verify. Our research team will not sell or rent your personal information or personal health information to any other company or organization. We will not share information with your insurance company and not even your doctor unless you tell us that you want them to have access to this information; there is a specific place for you to note your decision below. You can still participate in the Registry if you decide not to allow the researchers to share information back to your doctor(s).
The study investigator, the sponsor or persons working on behalf of the sponsor, and under certain circumstances, the Federal Office for Human Research Protections and Advarra Institutional Review Board (the IRB) will be able to inspect and copy confidential study-related records which identify you by name. Such access will be for research purposes and/or to ensure Registry protocols are being followed and Registry participants’ rights are being protected. Therefore, absolute confidentiality cannot be guaranteed. If the results of this study are published or presented at meetings, you will not be identified.
Who will be able to access my information?
The GHLF and PatientSpot team, Dr. Jeff Curtis, and his research colleagues at the University of Alabama at Birmingham and at Illumination Health, will have permission to receive, use, and share your personal health information. For example, sometimes GHLF staff would like to send information about research opportunities to people with specific conditions and this would require access to your email address and condition information. Those who oversee this project may have access to your information only if necessary including members and staff of the Institutional Review Board.
Will information in the Registry be connected to other disease registries?
Yes, in addition to asking patients from other disease registries to participate in the Registry, we plan on sharing data with other disease registries and data sources, based on your permission, but we will remove as much personally identifying information as possible before sharing. Only the minimum necessary amount of information needed to connect your data back to you will be shared or exchanged with others who already have your data. For example, regarding your lab tests, we would exchange only the minimum amount of information necessary to make sure we were receiving your lab data from your lab provider and not receiving someone else's data. Additionally, GHLFsometimes collaborates with other patient groups and research scientists to advance knowledge and treatment of health conditions captured by the Registry. These opportunities may include sharing of Registry information, including personally identifying information with other IRB-approved registries and research initiatives. For example, the Registry is supported by GHLF to participate in a patient-centered distributed research network (PCORnet) organized by the Patient Centered Outcomes Research Institute (PCORI).
The Registry's data will be connected with data from other registries to increase knowledge and better understand the effectiveness and safety of treatments for your condition. Information in the Registry may also be linked (supplemented) to data in other registries.
Will I be asked to provide additional information in the future?
Yes. Registries are most useful for scientific research when the information is kept up to date. Registry staff will e-mail you to inform you how/why you can contribute additional information. We may also provide a notification within the App displaying messaging regarding requests for additional information. It is your voluntary choice whether to provide additional information, and you can stay in the Registry either way.
What are the risks involved with participation, and how will my information be kept confidential? The main possible risk to you would be a loss of confidentiality of your information. We and our research partners are committed to maintaining the confidentiality of your Registry data using industry standards of computer encryption and data security. For example, when you are providing information to the Registry from the App on your smartphone, the App will scramble the data; this is called "encryption" and will use a secure channel to send your information from the App to the Registry storage location. This technology is similar to that used for online banking through your bank's website or smartphone app. Amazon Web Services (AWS, Illumination Health and University of Alabama at Birmingham (UAB) computer professionals will protect the security and confidentiality of your electronic information, including through passwords, authentication and firewalls, in a HIPAA compliant environment. For example, Dr. Curtis and his research team analyze the personally identifying Registry data that you contributed and authorized; however, they do not send any identifying information about you to GHLF. Before Registry information is sent to GHLF, it is “de-identified” consistent with HIPAA, which means it does not identify you and could not reasonably be used to identify you. Once the de-identified data is sent to GHLF, GHLF has additional safeguards in place, such as firewalls, encryption, protocols, and restricted access.
Despite numerous safeguards in place, the use of any electronic communication systems such as the World Wide Web has a number of risks. We cannot guarantee that there will not be a confidentiality breach but all parties involved will use reasonable means to protect your information.
Any new important information that is discovered during the Registry and which may influence your willingness to continue participation in the Registry will be made available to you.
What are the benefits of participation?
Although the App may help you better track your health, you may not benefit directly from participating. However, the data collected in the Registry may help other patients and researchers understand how to better treat your type of condition and improve the quality of care and outcomes for patients like you. Additionally, with your permission, some Registry data can be shared with your physician, and that supplemental information may assist in your doctor’s care and treatment of you.
What are the alternatives to participation?
The alternative is to choose not to participate in the Registry. Your decision to not participate in this registry will not affect your membership within the GHLF community.
Do I have to participate? What do I do if I want to drop out of the study?
Whether or not you take part in the Registry is your choice. There will be no penalty if you decide not to participate in the Registry. If you decide not to be in the Registry, you will not lose any benefits you are otherwise owed. You are free to withdraw from the Registry at any time. If you would like to remove yourself from the Registry, please send an email to [email protected]. Additionally, if you would like to remove yourself from the registry, you can also simply press the delete account button within the PatientSpot app.
When a patient chooses to leave the Registry, the information already collected following initial consent will continue to be housed and used by the Registry. However, you may additionally request in writing for us to delete all your personally identifying information upon withdrawing from the Registry if you wish to do so. Information which would not identify you and which has already been prepared and/or combined with others’ information before we received your deletion request would not be affected by your request.
Your choice to leave the Registry will not affect your relationship with us. You may be removed from the Registry if GHLF chooses to permanently close it. In the event that the researchers close or stop the Registry, all participants will be notified via email, as well as through in-app notification messages.
Will participation cost me anything?
No. There will be no cost to you to join the Registry. There is no direct cost for using the App. The App does use internet data. As with any app, regular data usage rates apply when the App is being used while roaming or off Wi-Fi service.
Will I be paid to participate in the research registry?
You will not receive any direct compensation for simply joining the Registry. However, there may be payments for participation in specific surveys or other activities you may be contacted about in the future through the Registry. It is your voluntary decision whether to participate in these surveys or other activities, whether they are compensated or not. We will always tell you clearly up front if a survey or additional research we are asking you to complete provides compensation to you. Please note, however, there is no guarantee that you will be eligible to participate in other future research surveys or that any such compensation will be available for such surveys.
Will I be told of new information or findings?
Yes. We at GHLF, Dr. Curtis, and our research partners will keep you up to date on new findings through the contact information that you provide to us as part of the Registry. We will tell you if new information becomes available that might affect your choice to stay in the Registry.
What about my legal rights?
You are not waiving any of your legal rights by signing this informed consent document.
Whom to contact about this study
If you have any questions about the registration process or about participation in the Registry, please contact Shilpa Venkatachalam, the Principal Investigator of the research at the Global Healthy Living Foundation at [email protected]. You may also call Dr. Jeffrey Curtis at 205-975-2176. To inquire about your rights as a participant in the Registry, or to report problems that result from your participation in the Registry, you may contact Shilpa Venkatachalam from the Global Healthy Living Foundation at (845) 348-0400 or email [email protected].
An institutional review board (IRB) is an independent committee established to help protect the rights of research subjects. If you have any questions about your rights as a research subject, and/or concerns or complaints regarding this research study, contact:
• By mail:
Study Subject Adviser
Advarra IRB
6100 Merriweather Dr., Suite 600
Columbia, MD 21044
• or call toll free: 877-992-4724 • or by email: [email protected]
Please reference the following number when contacting the Study Subject Adviser: Pro00026788. You will receive a PDF copy of the informed consent document upon signing and providing informed consent. Your signed informed consent document is available for download within your Account information on the web-based or mobile App. Please note that when you store and view the consent document on your personal electronic device, your information could be compromised in the event that your device is lost or hacked, or if you choose to share your device, password or login credentials with someone else.
Yes, GHLF, including its agents and employees may release my email address to other researchers who are conducting studies in chronic diseases or who are looking for individuals to invite for other possible research studies. I understand that only my email address will be released and I may decline to participate in the additional study. I understand that whether or not I permit release of my email address to other researchers does not affect my participation in the Registry. I understand that I may revoke (cancel) this permission at any time by contacting Shilpa Venkatachalam in writing at GHLF at [email protected].
Please see the Authorization language below regarding release, use and disclosure of your Health Related Data, Personal Information, Personal Health Information (PHI) and Electronic or Other Data Collection, as defined in the Informed Consent form; for convenience, these categories are combined and listed as “Personal Information, Medical Records and PHI” below. This Authorization is combined with the research study Informed Consent form, as permitted by the Health Insurance Portability and Accountability Act (HIPAA) and state law. If you wish to participate in the research Registry, your participation is conditioned on (requires) the Authorization as set forth below too. However, if you do not agree to the Authorization below, you must decline participating in the Registry. Also, if you choose to receive research-related treatment as part of Registry research, this requires the Authorization below so that we can learn the results of such research-related treatment.
AUTHORIZATION TO USE AND DISCLOSE PERSONAL INFORMATION, MEDICAL RECORDS AND PHI FOR RESEARCH PURPOSES
Participant Name: DOB:
By signing this document, I certify that I am the Participant listed above, and I voluntarily authorize the release, use and disclosure of all of my personal, medical record and protected health information (collectively “PHI”) as described below.
Information Included*: Complete medical record, health history, physical examination, condition, diagnosis or prognosis, notes, prescriptions, diagnostic test results, any reports, all images of any kind (xrays, photographs, MRI, CT, etc.) and any and all other health information and information related to health benefits including claims, payment, and medical billing records associated with the individual’s health or treatment.
*Certain PHI Not Included: I understand this Authorization does not include HIV, AIDS, mental health, substance abuse, or genetic information; persons and entities relying on this Authorization should not include such information or records.
Persons Authorized to Make the Use or Disclosure: Any hospital, health care facility, clinic, laboratory, pharmacy, physician, nurse or any other health care facility or health care provider who has provided assessment, care or treatment to me plus any health plan, insurer or government payor who has received, paid or reimbursed health care claims by me or on my behalf. I understand that PHI also includes records disclosed to them by other health care providers or facilities who previously provided treatment to me.
Purpose; No Expiration Date: The purpose of this Authorization is to participate in the PatientSpot research registry, for research and for other purposes as described in the signed Informed Consent form. Because this authorization is for research purposes, I understand it has no expiration date. Photocopy or PDF permitted: A photocopy or PDF of this document will be as valid as the original Authorization. Because this Authorization is combined as part of a longer Informed Consent form, I specifically request and permit GHLF to condense a photocopy or PDF of this Authorization, so it only includes the Authorization form and my signature, when submitting the Authorization to obtain medical records and PHI.
Recipients: Those who may have access to, receive and review the PHI are: the Global Healthy Living Foundation’s PatientSpot researchers and staff, Dr. Jeffrey Curtis, and the research staff at University of Alabama at Birmingham and Illumination Health who work on PatientSpot, and each of their permitted contractors. The PHI should be submitted to: Jeffrey Curtis, University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, 510 20th Street South, FOT 802D, Birmingham AL 35294, PHONE: 205975-2176 EMAIL: [email protected].
Right to Revoke: I understand that I may revoke (take back) this authorization at any time by submitting my written request to the PatientSpot research team at Global Healthy Living Foundation, Attn: PatientSpot, 515 N. Midland Ave, Upper Nyack, NY 10960. I also understand that my revocation will not affect any actions taken by GHLF, Dr. Curtis or PatientSpot researchers in reliance upon this authorization before it was received. I also understand my revocation will not affect data which has already been de-identified or aggregated with others’ data before my revocation was received. My revocation of authorization prevents future disclosures of the data and information provided by me for research purposes. I understand that this revocation does not mean that the information and data provided by me, prior to my decision to revoke, will no longer be used in the research study or disclosed for any other purpose. The information and data provided by me for research that was conducted based on authorization will be stored indefinitely (forever) and will be used for future research studies until the Registry is permanently closed.
Right Not to Sign: I also acknowledge my right not to sign this document and that such refusal will not affect any treatment, payment, health plan enrollment or eligibility for benefits that I already have. However, I understand that my refusal to sign this Authorization will prevent my participation in the PatientSpot research study Registry.
Re-disclosure: I acknowledge that there is a potential risk that the information and PHI used or disclosed pursuant to this Authorization may be subject to redisclosure by the Recipients, and no longer be protected by the HIPAA Privacy Rule. I understand that further information on confidentiality of study records is covered in my PatientSpot consent form.
I have read and understand this Authorization and Informed Consent Form, and any questions have been answered to my satisfaction before I decided to sign this document.

Documento de consentimiento informado

7/02/2017 Versión 2.0

Patrocinador / Título del estudio:	Global Healthy Living Foundation con financiación inicial de PCORI (el Instituto de Investigación de Resultados Centrados en el Paciente). PCORI recibe su financiación y, a su vez, adjudica contratos a organizaciones de pacientes o universidades. La financiación del PCORI fue establecida por el Congreso a través de la Ley de Protección al Paciente y Atención Médica Asequible de 2010 / “Registro de Investigación de PatientSpot”
Número de protocolo:	PatientSpot
Investigador principal: (Médico del estudio)	Shilpa Venkatachalam, PhD (Directora de Operaciones Centradas en el Paciente y Supervisión Ética, Global Healthy Living Foundation)
Número de teléfono:	845-348-0400
Contacto(s) adicional(es): (Personal del estudio)	Los subinvestigadores incluyen: Jeffrey Curtis, MD, MS, MPH (Universidad de Alabama en Birmingham, División de Inmunología Clínica y Reumatología)

¿Cuál es el propósito de PatientSpot?

Solicitamos su participación en el registro de investigación de PatientSpot. Como se explica con más detalle a continuación, un registro es una recopilación de información sobre individuos, a menudo aquellos que tienen un diagnóstico o condición específica, y los individuos comparten voluntariamente información de si mismos con el Registro.

El propósito de este Registro es utilizar la aplicación informática móvil y web de PatientSpot (la Aplicación) para recopilar información de pacientes como usted que han sido diagnosticados por un médico y viven con enfermedades crónicas

La información recopilada en este estudio del Registro:

Se puede utilizar para realizar un seguimiento de su salud y cómo se siente. Puede utilizar su nombre de usuario y contraseña para acceder a su información a través de la aplicación móvil PatientSpot en su teléfono inteligente o en la web en www.patientspot.org.
Se almacenará indefinidamente (para siempre) y se utilizará para futuros estudios de investigación, a menos que usted solicite retirarse del Registro o hasta que el Registro se cierre permanentemente. Los investigadores utilizarán la información para ayudarles a comprender mejor las experiencias de los pacientes con los medicamentos, los resultados y la calidad de vida. Además, en el futuro, es posible que los científicos quieran estudiar nuevos tratamientos e invitar a pacientes a participar en un ensayo clínico. El Registro puede ayudar a los participantes interesados a comunicarse con estos científicos. (Será su decisión voluntaria si desea participar en un ensayo clínico).
Se utilizará para evaluar la efectividad del uso y la satisfacción del paciente con la aplicación móvil PatientSpot. Los investigadores también utilizarán la información recopilada durante esta investigación para crear un conjunto continuo de aplicaciones móviles y basadas en Internet para ayudar a los pacientes a realizar un mejor seguimiento de su salud.

La Global Healthy Living Foundation (GHLF) no es un proveedor de atención médica. El uso previsto de la aplicación no es para el diagnóstico de una enfermedad ni para la cura, mitigación, tratamiento o prevención de una enfermedad, ni tampoco pretende afectar la estructura o función del cuerpo humano. En cambio, durante su participación en el registro, se recopilará información sobre usted mientras usa la Aplicación y a través de encuestas y cuestionarios que se le enviarán para que los complete. Además de la información que usted ingresa en estas "herramientas de encuesta", a GHLF también le gustaría obtener su permiso para recopilar información de sus registros médicos electrónicos que están disponibles en algunos laboratorios clínicos, con proveedores de atención médica y sistemas de atención médica y farmacias y/o Información de salud electrónica que está disponible en su plan o compañía de seguro médico. Con su permiso, también queremos poder recopilar información que pueda compartir con nosotros desde sus propios dispositivos o rastreadores de salud, como Fitbit o Jawbone, e información de su propio teléfono (su geolocalización e información asociada). Por último, podremos compartir su información con su proveedor de atención médica.

No todas estas funciones están disponibles actualmente con la aplicación. Sin embargo, le avisaremos durante su participación en el Registro cuando se amplíen los usos potenciales de la Aplicación para que pueda optar por participar en esos usos si decide hacerlo voluntariamente. Planeamos combinar los datos electrónicos con el resto de la información que usted nos proporciona voluntariamente y almacenarla en el Registro.

Se le pedirá que firme este formulario de consentimiento electrónico para ser parte del Registro y este formulario de consentimiento combina el consentimiento para participar en el Registro con una autorización de la Ley de Responsabilidad y Portabilidad del Seguro Médico (“HIPAA”) y es consistente con la ley estatal aplicable. Tenga en cuenta que el Registro en este momento está destinado únicamente a residentes de los Estados Unidos y territorios de los Estados Unidos que tengan la mayoría de edad para participar en sus respectivos estados.

¿Qué es un registro de investigación?

Un registro de investigación de pacientes es un lugar para guardar información detallada sobre pacientes con una enfermedad o afección específica. En este caso, el Registro PatientSpot es para pacientes con enfermedades crónicas especificas. El establecimiento del Registro aborda muchas necesidades importantes. En primer lugar, los científicos que estudian estas enfermedades necesitan información precisa y directa de los pacientes para comprender cómo las personas se ven afectadas por una enfermedad y sus tratamientos. El Registro utilizará información ya recopilada para futuros estudios de investigación para comprender mejor cómo los diferentes tratamientos conducen a mejores o peores resultados para los pacientes con enfermedades crónicas.Si tiene creencias o preferencias culturales o religiosas que prohíben ciertos tipos de investigación futura, coméntelas con el investigador antes de aceptar participar en el Registro.

¿Qué se me pedirá que haga?

Es posible que haya oído hablar del Registro de diversas maneras, como a través de la página de Facebook o el sitio web de GHLF, un folleto en el consultorio de su médico, la participación en otro registro de investigación de pacientes o un evento. alcance comunitario. Puede hablar sobre el Registro con una de las investigadoras del estudio, Shilpa Venkatachalam, de Global Healthy Living Foundation (GHLF) al 1-845-348-0400 o enviar un correo electrónico a [email protected] si tiene alguna pregunta.

Una vez que se haya registrado en el Registro, nos gustaría que complete encuestas en línea en las que reportará datos sobre su salud. En el futuro puede haber encuestas adicionales que le pediremos que complete. Todas las encuestas son opcionales. Puede optar por NO completar las encuestas y aun así participar en el Registro.

Es posible que se le solicite o no que participe en futuros estudios de investigación. En algunos estudios de investigación futuros, los investigadores pueden pedirle que nos permita obtener resultados de análisis de muestras de sangre según lo ordenado por su médico o solicitándolo a un laboratorio (según lo permita la ley estatal) para recopilar más información sobre enfermedades crónicas. Se le pedirá que firme un consentimiento informado nuevo y por separado para cualquier estudio o información de investigación complementaria que implique análisis o extracción de sangre. La cantidad de muestra de sangre necesaria dependerá del tipo de prueba de laboratorio a la que se someta voluntariamente. Siempre se le preguntará si desea participar en estos proyectos adicionales y no necesita participar en los proyectos de recolección o prueba de sangre para permanecer en el Registro. En el futuro, es posible que también le pregunten si desea que otros investigadores se comuniquen con usted para participar en estudios o ensayos clínicos.

¿Qué tipo de información se recopilará en el Registro?

Datos relacionados con la salud: a través de encuestas que capturan información sobre cómo se encuentra, el dolor que experimenta, movilidad y tipos de datos similares, puede realizar un mejor seguimiento de su salud y proporcionar información para respaldar investigaciones que ayuden a otras personas con la misma condición de salud.
Información personal: Necesitamos conocer cierta información sobre usted para respaldar la investigación de pacientes, crear herramientas y ofrecerle recursos útiles. Por ejemplo, le pedimos su nombre, fecha de nacimiento, dirección postal, dirección de correo electrónico, etc.
Información de salud personal: la información que ingrese en el Registro se almacenará en servidores seguros ubicados dentro de los centros de datos de Amazon Web Services (AWS) y se pondrá a disposición de nuestros socios de investigación, incluido el Dr. Jeff Curtis y también su equipo de investigación en la Universidad de Alabama en la División de Inmunología Clínica y Reumatología (UAB) de Birmingham y en Illumination Health, el repositorio de datos de reumatología más grande que utiliza datos del mundo real para impulsar correcciones de rumbo y mejorar los resultados durante todo el recorrido del paciente. El Dr. Jeff Curtis es un investigador que trabaja con la investigadora del estudio Shilpa Venkatachalam. Como se indicó anteriormente, su información puede complementarse con otras fuentes de información que usted nos permita recibir, como datos del plan de salud sobre el uso de medicamentos, resultados de laboratorio y utilización de la atención médica, e información que usted elija compartir con nosotros desde sus propios rastreadores de actividad física. y otros dispositivos portátiles personales.
Recopilación de datos electrónicos o de otro tipo: queremos ayudarle a personalizar su experiencia y maximizar la eficiencia de su tiempo al utilizar la aplicación. Por lo tanto, nos gustaría capturar información de ubicación y su ubicación web (dirección de protocolo de Internet) desde el dispositivo móvil en el que ejecuta la aplicación. Puede desactivar el rastreador de ubicación si no desea permitirlo. Además, recopilaremos otra información que nos ayude a personalizar las herramientas electrónicas que proporcionamos para que coincidan mejor con sus preferencias y tamaño de pantalla, como el tipo de navegador en línea que utiliza (por ejemplo, Safari, Chrome, Explorer, Mozilla), su idioma preferido, así como el uso de "cookies" que almacenan información en su navegador. Esta información se puede utilizar para organizar la aplicación móvil de la manera más fácil de usar, personalizar su experiencia de navegación y realizar un seguimiento de las preferencias de las personas que utilizan la aplicación.

¿Por qué me piden esta información?

Su información de identificación personal se puede utilizar para realizar un seguimiento y recopilar información adicional para usted y nuestros socios de investigación sobre su estado de salud. A continuación, se muestran ejemplos de cómo se puede utilizar esta información.

Encuestas de investigaciones futuras y actualizaciones de estudios: Ocasionalmente, es posible que nos comuniquemos con usted por correo electrónico, Internet, correo postal o teléfono para responder preguntas sobre su condición de salud, su tratamiento u otros aspectos de su salud. Estos datos complementarán la información del Registro y la recopilada en la Aplicación.

Su decisión de participar en esta futura investigación y responder las preguntas de la encuesta es completamente voluntaria.

Datos complementarios: su información de salud puede complementarse con otras bases de datos externas, como los datos de su plan de salud, reclamos administrativos, laboratorio, registros médicos, otros resultados informados por los pacientes, datos de farmacia y sus propios rastreadores de actividad física y otros dispositivos portátiles personales. No puede participar en este estudio si no permite que los investigadores recopilen información de sus compañías de seguros, planes de salud, laboratorios, médicos y otros proveedores y sistemas de atención médica. Estos datos se utilizarán para complementar la información del Registro. Sólo podrán acceder a estos datos las personas autorizadas para hacerlo, y la información almacenada en ellos no está disponible para el público en general. Tenga en cuenta que estos Datos complementarios, cuando se solicitan, no pretenden buscar información sobre VIH, SIDA, salud mental, abuso de sustancias o genética sobre usted.

Información de seguimiento: Si no puede responder las preguntas por sí mismo, nos gustaría comunicarnos con una persona que haya designado que pueda responder las preguntas por usted, como un contacto de emergencia o una parte responsable. Planeamos acceder a la información de contacto de esta persona a través de la información de su registro médico electrónico (si/cuando esta información esté disponible para los investigadores). Esto puede incluir obtener información sobre la causa de su muerte si fallece mientras aún es miembro del Registro. Esto sería similar a un representante personal según HIPAA, como su cónyuge o un agente de atención médica designado por usted. Es su decisión voluntaria designar a alguien para que GHLF se comunique con él si no puede responder las preguntas usted mismo.

¿Se compartirá mi información personal con alguien?

Con su permiso, podemos solicitar datos adicionales sobre usted de fuentes como laboratorios, farmacias, sus proveedores de atención médica, sistemas de atención médica o su compañía de seguro médico. Para asegurarnos de que obtengamos su información y no la de otra persona, podemos compartir parte de su información de identificación personal para verificarla. Nuestro equipo de investigación no venderá ni alquilará su información personal o su información de salud personal a ninguna otra empresa u organización. No compartiremos información con su compañía de seguros ni siquiera con su médico a menos que usted nos diga que desea que tengan acceso a esta información; hay un lugar específico para que usted anote su decisión a continuación. Usted aún puede participar en el Registro si decide no permitir que los investigadores compartan información con su(s) médico(s).

El investigador del estudio, el patrocinador o las personas que trabajan en nombre del patrocinador y, en determinadas circunstancias, la Oficina Federal para la Protección de la Investigación Humana y la Junta de Revisión Institucional de Advarra (el IRB, por sus siglas en inglés) podrán inspeccionar y copiar registros confidenciales relacionados con el estudio que identifiquen usted por su nombre. Dicho acceso será para fines de investigación y/o para garantizar que se sigan los protocolos del Registro y se protejan los derechos de los participantes del Registro. Por lo tanto, no se puede garantizar la absoluta confidencialidad. Si los resultados de este estudio se publican o se presentan en reuniones, usted no será identificado.

¿Quién podrá acceder a mi información?

El equipo de GHLF y PatientSpot, el Dr. Jeff Curtis, y sus colegas de investigación de la Universidad de Alabama en Birmingham e Illumination Health tendrán permiso para recibir, usar y compartir su información de salud personal. Por ejemplo, a veces, el personal de GHLF desea enviar información sobre oportunidades de investigación a personas con condiciones específicas, y esto requeriría acceso a su dirección de correo electrónico y a la información sobre su condición. Quienes supervisen este proyecto podrán tener acceso a su información solo si es necesario, incluidos los miembros y el personal de la Junta de Revisión Institucional.

¿La información del Registro estará conectada con otros registros de enfermedades?

Sí, además de pedir a los pacientes de otros registros de enfermedades que participen en el Registro, planeamos compartir datos con otros registros de enfermedades y fuentes de datos según su permiso. Aún así, eliminaremos tanta información de identificación personal como sea posible antes de compartirla. Solo se compartirá o intercambiará con otras personas que ya tengan sus datos la cantidad mínima necesaria de información necesaria para conectar sus datos con usted. Por ejemplo, con respecto a sus pruebas de laboratorio, intercambiaríamos solo la cantidad mínima de información necesaria para asegurarnos de recibir sus datos de laboratorio de su proveedor de laboratorio y no de los datos de otra persona. Además, GHLF a veces colabora con otros grupos de pacientes y científicos investigadores para avanzar en el conocimiento y el tratamiento de las condiciones de salud capturadas por el Registro. Estas oportunidades pueden incluir compartir información del Registro, incluyendo información de identificación personal con otros registros e iniciativas de investigación aprobados por el IRB. Por ejemplo, el Registro cuenta con el apoyo de GHLF para participar en una red de investigación distribuida centrada en el paciente (PCORnet) organizada por el Instituto de Investigación de Resultados Centrados en el Paciente (PCORI).

Los datos del Registro se conectarán con datos de otros registros para aumentar el conocimiento y comprender mejor la efectividad y seguridad de los tratamientos para su afección. La información del Registro también puede vincularse (complementarse) con datos de otros registros.

¿Me pedirán que proporcione información adicional en el futuro?

Sí. Los registros son más útiles para la investigación científica cuando la información se mantiene al dia. El personal del Registro le enviará un correo electrónico para informarle cómo y por qué puede contribuir con información adicional. También podemos proporcionar una notificación dentro de la aplicación móvil que muestre mensajes sobre solicitudes de información adicional. Es su elección voluntaria proporcionar información adicional, y puede permanecer en el Registro de cualquier manera.

¿Cuáles son los riesgos relacionados con la participación y cómo se mantendrá mi información confidencial?

El mayor riesgo posible para usted sería la pérdida de confidencialidad de su información. Nosotros y nuestros socios de investigación estamos comprometidos a mantener la confidencialidad de sus datos de Registro utilizando estándares industriales de cifrado informático y seguridad de datos. Por ejemplo, cuando proporciona información al Registro desde la aplicación en su teléfono inteligente, la aplicación codificará los datos; esto se llama "cifrado" y utilizará un canal seguro para enviar su información desde la aplicación a la ubicación de almacenamiento del Registro. Esta tecnología es similar a la que se utiliza en la banca en línea a través del sitio web o la aplicación móvil para teléfonos de su banco. Los profesionales informáticos de Amazon Web Services (AWS, Illumination Health y la Universidad de Alabama en Birmingham (UAB) protegerán la seguridad y la confidencialidad de su información electrónica, incluso mediante contraseñas, autenticación y firewalls, en un entorno compatible con HIPAA. Por ejemplo, El Dr. Curtis y su equipo de investigación analizan los datos de registro de identificación personal que usted aportó y autorizó; sin embargo, no envían ninguna información de identificación sobre usted a GHLF. Antes de enviar la información de registro a GHLF, se la "desidentifica" de conformidad con HIPAA. , lo que significa que no lo identifica y no podría usarse razonablemente para identificarlo. Una vez que los datos no identificados se envían a GHLF, GHLF cuenta con medidas de seguridad adicionales, como firewalls, cifrado, protocolos y acceso restringido.

A pesar de las numerosas salvaguardias existentes, el uso de cualquier sistema de comunicación electrónica, como el Web mundial en línea, conlleva varios riesgos. No podemos garantizar que no habrá una violación de la confidencialidad, pero todas las partes involucradas utilizarán medios razonables para proteger su información.

Cualquier nueva información importante descubierta durante el Registro que pueda influir en su voluntad de continuar participando en el Registro se pondrá a su disposición.

¿Cuáles son los beneficios de participar?

Aunque la aplicación puede ayudarle a realizar un mejor seguimiento de su salud, es posible que no se beneficie directamente al participar. Sin embargo, los datos recopilados en el Registro pueden ayudar a otros pacientes e investigadores a comprender cómo tratar mejor su condición de salud y mejorar la calidad de la atención y los resultados para pacientes como usted. Además, con su permiso, algunos datos del Registro se pueden compartir con su médico, y esa información complementaria puede ayudar en la atención y el tratamiento que le brinda de su médico.

¿Cuáles son las alternativas a la participación?

La alternativa es optar por no participar en el Registro. Su decisión de no participar en este registro no afectará su membresía dentro de la comunidad GHLF.

¿Tengo que participar? ¿Qué hago si quiero abandonar el estudio?

Participar o no en el Registro es su elección. No habrá penalización si decide no participar en el Registro. Si decide no estar en el Registro, no perderá ningún beneficio que de otro modo se le adeude. Usted es libre de retirarse del Registro en cualquier momento. Si desea retirarse del Registro, envíe un correo electrónico a [email protected], o simplemente presione el botón “Eliminar cuenta” dentro de la aplicación PatientSpot.

Cuando un paciente decide abandonar el Registro, la información ya recopilada después del consentimiento inicial continuará siendo alojada y utilizada por el Registro. Sin embargo, también puede solicitar por escrito que eliminemos toda su información de identificación personal al retirarse del Registro si así lo desea. Su solicitud no afectaría la información que no lo identificaría y que ya ha sido preparada y/o combinada con la información de otros antes de que recibiéramos su solicitud de eliminación.

Su elección de abandonar el Registro no afectará su relación con nosotros. Es posible que lo eliminen del Registro si GHLF decide cerrarlo permanentemente. Si los investigadores cierran o detienen el Registro, todos los participantes serán notificados por correo electrónico y mensajes de notificación en la aplicación.

¿Me costará algo la participación?

No. Unirse al Registro no tendrá ningún costo para usted. No hay ningún costo directo por usar la aplicación móvil. La aplicación móvil utiliza datos de Internet. Al igual que con cualquier aplicación móvil, se aplican tarifas regulares de uso de datos cuando la aplicación móvil se utiliza en “roaming” o sin servicio Wi-Fi.

¿Me pagarán por participar en el registro de investigación?

No recibirá ninguna compensación directa por simplemente unirse al Registro. Sin embargo, es posible que haya pagos por participar en encuestas específicas u otras actividades sobre las que se le puede contactar a través del Registro. Es su decisión voluntaria participar en estas encuestas u otras actividades, ya sea que sean compensadas o no. Siempre le informaremos de antemano si una encuesta o investigación adicional que le solicitamos que complete le proporciona una compensación. Sin embargo, tenga en cuenta que no hay garantía de que sea elegible para participar en otras encuestas de investigación futuras o de que dicha compensación esté disponible.

¿Me informarán sobre nueva información o hallazgos?

Sí. Nosotros en GHLF, el Dr. Curtis y nuestros socios de investigación lo mantendremos informado sobre nuevos hallazgos a través de la información de contacto que nos proporcione como parte del Registro. Le informaremos si hay nueva Informacion disponible que pueda afectar su elección de permanecer en el Registro. ¿Qué pasa con mis derechos legales?

Usted no renuncia a ninguno de sus derechos legales al firmar este documento de consentimiento informado.

A quién contactar acerca de este estudio.

Si tiene alguna pregunta sobre el proceso de registro o la participación en el Registro, comuníquese con Shilpa Venkatachalam, la investigadora principal de la investigación en el Global Healthy Living Foundation en [email protected]. También puede llamar al Dr. Jeffrey Curtis al 205-975-2176. Para consultar sobre sus derechos como participante en el Registro o para informar de problemas que resulten de su participación en el Registro, puede comunicarse con Shilpa Venkatachalam de Global Healthy Living Foundation al (845) 348-0400 o enviar un correo electrónico a [email protected].

Una junta de revisión institucional (IRB) es un comité independiente establecido para ayudar a proteger los derechos de los sujetos de investigación. Si tiene alguna pregunta sobre sus derechos como sujeto de investigación y/o inquietudes o quejas con respecto a este estudio de investigación, contáctenos:

Por correo:
Study Subject Adviser Advarra IRB
6100 Merriweather Dr., Suite 600
Columbia, MD 21044
o llame gratis: 877-992-4724
o por correo electrónico: [email protected]

Consulte el siguiente número de referencia cuando se comunique el Asesor de Temas del Estudio: Pro00026788.

Recibirá una copia en PDF del documento de consentimiento informado al firmar y otorgar el consentimiento informado. Su documento de consentimiento informado firmado está disponible para su descarga dentro de la información de su Cuenta en la aplicación móvil o basada en el web. Tenga en cuenta que cuando almacena y ve el documento de consentimiento en su dispositivo electrónico personal, su información podría verse comprometida si su dispositivo se pierda o es pirateado o si comparte su dispositivo, contraseña o credenciales de inicio de sesión con otra persona.

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Effective Date: November 9th 2023

Global Healthy Living Foundation (“GHLF”, “we”, “our”, us”) is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people with chronic illnesses. We are an online collaborative collection of health-related topics. We advocate nationally for improved access to care and educate about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement, and therapeutic compliance.
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These Terms of Use (“Terms”) set forth a legally binding agreement between you and Global Healthy Living Foundation and govern your use of GHLF-related sites, www.ghlf.org, www.creakyjoints.org.es, www.painspot.com, www.creakyjoints.org.es, www.50statenetwork.org, www.failfirsthurts.org (collectively, the “Site”).
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You will only submit User Content that is functionally and technically compatible with this Site. You will not attempt to damage, corrupt, tamper with, or infect the Site, the Content, or any information or telecommunication system of GHLF with a virus or other malicious computer program. You will only use the Site for the permitted purposes stated in these Terms and will not engage in abusive activity with respect to the Site or undertake any other activity which may adversely affect the use or enjoyment of the Site by any person. You are prohibited from using any services or facilities provided in connection with this Site to compromise security or tamper with system resources and/or accounts. The use or distribution of tools designed for compromising security (e.g., network probing tools) is strictly prohibited. If you become involved in any violation of system security, GHLF reserves the right to release your details to system administrators of other sites and services and law enforcement authorities in order to assist them in resolving security incidents.
3. Communications
We may communicate with you electronically in regard to the Site, including by email, and we may collect information related to communications between you and GHLF. You agree that all notices, disclosures, agreements, and other communications that we provide to you electronically satisfy any legal requirement that such communications be in writing. You agree that any time you electronically transact, agree, or consent via the Site, your action is intended as an electronic signature which binds you as if you had signed on paper.
You may cancel or modify our email marketing communications you receive from us by following the instructions contained within our promotional emails. This will not affect your access to the Site. Please note that we reserve the right to send you certain communications relating to your account or use of our Site, such as administrative and service announcements, and these transactional account messages may be unaffected if you choose to opt-out from receiving our marketing communications.
4. Access to the Site
Your use of the Site must be in accordance with any and all procedures, forms, formats, displays, and operating times which may be determined, specified, or modified by GHLF in its discretion. You are responsible for all software, hardware, interconnections, fees, expenses, costs, and taxes for you to access or use the Site or to receive any communications from GHLF. Accessing some of the Content may require the creation of an account. If you register with us or create an account, you are solely responsible and liable for the security and confidentiality of your access and for all activity under your account. You are solely responsible for your registration information and for updating and maintaining it. You will immediately notify us at [email protected] of any unauthorized use of your account, password, or username, or any other breach of security, but will remain responsible for any unauthorized use thereafter. You will not sell, transfer, or assign your account or any account rights.
The Site may be unavailable from time to time for any reason including, without limitation, routine maintenance. You understand and acknowledge that due to circumstances both within and outside of the control of GHLF, access to the Site may be interrupted, suspended, or terminated from time to time. GHLF shall have the right at any time to change or discontinue any aspect or feature of the Site, including, but not limited to, Content, hours of availability, and equipment needed for access or use.
5. Warranty Disclaimer
THE SITE, ITS CONTENT, AND ITS LINKS AND COMMUNICATIONS ARE PROVIDED ON AN “AS IS” BASIS AND ARE USED AT YOUR SOLE RISK, TO THE FULLEST EXTENT PERMISSIBLE BY LAW. GHLF DISCLAIMS ALL WARRANTIES, REPRESENTATIONS, AND CONDITIONS, EXPRESS OR IMPLIED, OF ANY KIND, REGARDING THE SITE (INCLUDING ITS CONTENT, HARDWARE, SOFTWARE, AND LINKS), INCLUDING ANY IMPLIED WARRANTIES AS TO FITNESS FOR A PARTICULAR PURPOSE, MERCHANTABILITY, TITLE, NONINFRINGEMENT, RESULTS, ACCURACY, COMPLETENESS, ACCESSIBILITY, COMPATIBILITY, SECURITY, AND FREEDOM FROM COMPUTER VIRUS. IF APPLICABLE LAW DOES NOT ALLOW THE EXCLUSION OF SOME OR ALL OF THE ABOVE IMPLIED WARRANTIES TO APPLY TO YOU, THE ABOVE EXCLUSIONS WILL APPLY TO YOU TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW.
6. Limitations on Liability and Remedies
GHLF’S ENTIRE LIABILITY AND YOUR EXCLUSIVE REMEDY WITH RESPECT TO ANY DISPUTE WITH GHLF (INCLUDING WITHOUT LIMITATION YOUR USE OF THE SITE OR RECEIPT OF ANY COMMUNICATIONS) IS TO DISCONTINUE YOUR USE OF THE SITE. GHLF AND ITS VENDORS SHALL NOT BE LIABLE FOR ANY DIRECT, INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL, OR EXEMPLARY DAMAGE ARISING FROM YOUR USE OF THE SITE, RECEIPT OF ANY COMMUNICATION, OR FOR ANY OTHER CLAIM RELATED IN ANY WAY TO YOUR USE OF THE SITE. THESE EXCLUSIONS FOR DIRECT, INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL, OR EXEMPLARY DAMAGES INCLUDE, WITHOUT LIMITATION, DAMAGES FOR LOST PROFITS, LOST DATA, LOSS OF GOODWILL, WORK STOPPAGE, COMPUTER FAILURE OR MALFUNCTION, OR ANY OTHER COMMERCIAL DAMAGES OR LOSSES, EVEN IF GHLF HAD BEEN ADVISED OF THE POSSIBILITY THEREOF AND REGARDLESS OF THE LEGAL OR EQUITABLE THEORY UPON WHICH THE CLAIM IS BASED. BECAUSE SOME STATES OR JURISDICTIONS DO NOT ALLOW THE EXCLUSION OR THE LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, IN SUCH STATES OR JURISDICTIONS, GHLF AND ITS VENDORS’ LIABILITY IN SUCH STATE OR JURISDICTION SHALL BE LIMITED TO THE EXTENT PERMITTED BY LAW. GHLF DOES NOT ENDORSE, WARRANT, OR GUARANTEE ANY PRODUCT OR SERVICE OFFERED THROUGH A WEBSITE OR AS PART OF THIS SITE AND WILL NOT BE A PARTY TO OR IN ANY WAY BE RESPONSIBLE FOR MONITORING ANY TRANSACTION BETWEEN YOU AND THIRD-PARTY PROVIDERS OF PRODUCTS OR SERVICES. IN ANY EVENT, IF ANY OF THE ABOVE PROVISIONS IN THIS SECTION ARE NOT ENFORCEABLE IN AN APPLICABLE JURISDICTION, THE MAXIMUM LIABILITY OF GHLF WILL BE LIMITED TO ANY AMOUNT PAID TO GHLF BY YOU IN CONNECTION WITH THE PRODUCTS AND/OR SERVICES THAT UNDERLIE THE CLAIM. 7. Waiver of Injunctive or Other Equitable Relief
YOU AGREE THAT YOU WILL NOT BE PERMITTED TO OBTAIN AN INJUNCTION OR OTHER EQUITABLE RELIEF OF ANY KIND SUCH AS ANY COURT OR OTHER ACTION THAT MAY INTERFERE WITH OR PREVENT THE DEVELOPMENT OR EXPLOITATION OF ANY WEBSITE, APPLICATION, CONTENT, SUBMISSIONS, PRODUCT, SERVICE, OR INTELLECTUAL PROPERTY OWNED, LICENSED, USED, OR CONTROLLED BY GHLF.
8. Indemnification
You agree to defend, indemnify, and hold harmless GHLF from and against any and all claims, liabilities, damages, losses, costs, and expenses (including reasonable attorneys’ fees and costs) arising out of or in connection with any of the following: (i) your breach or alleged breach of these Terms; (ii) your use of the Site; (iii) your User Content; (iv) your violation of any laws, rules, regulations, codes, statutes, ordinances, or orders of any governmental or quasi-governmental authorities; (v) your violation of the rights of any third party including any intellectual property, publicity, confidentiality, property, or privacy right; or (vi) any misrepresentation made by you. GHLF reserves the right to assume, at your expense, the exclusive defense and control of any matter subject to indemnification by you. You agree to cooperate with GHLF’s defense of any claim. You will not in any event settle any claim without the prior written consent of GHLF.
9. Third-Party Sites and Other Information.
The Site may contain, as a convenience to you, content, links, and other information submitted by third parties over whom GHLF has no control or responsibility, as well as translations thereof which GHLF may arrange. GHLF has no obligation to monitor, control, or restrict the use of the Site, or third-party websites or services accessible via links available as part of the Site. These other websites or services are not under GHLF’s control, and you acknowledge that, whether or not such websites or services are affiliated in any way with GHLF, GHLF is not responsible for the accuracy, copyright compliance, legality, decency, or any other aspect of the content of such websites or services. The inclusion of such a link does not imply endorsement of any website or service by GHLF or any association with its operators.
10. General Provisions
Severability; Interpretation; Assignment. If any provision of these Terms is for any reason deemed invalid, unlawful, void, or unenforceable, then that provision will be deemed severable from these Terms and the invalidity of the provision will not affect the validity or enforceability of the remainder of these Terms. The summaries of provisions and Section headings are provided for convenience only and shall not limit the full Terms. GHLF may assign its rights and obligations under these Terms, in whole or in part, to any party at any time without any notice. These Terms may not be assigned by you, and you may not delegate your duties under them, without the prior written consent of an officer of GHLF.
Complete Agreement; No Waiver. These Terms reflect our complete agreement regarding the Site and supersede any prior agreements, representations, warranties, assurances, or discussion related to the Site. Except as expressly set forth in these Terms, (i) no failure or delay by GHLF in exercising any of the rights, powers, or remedies hereunder will operate as a waiver of that or any other right, power, or remedy, and (ii) no waiver or modification of any term of these Terms will be effective unless in writing and signed by GHLF.
Governing Law and Venue. These Terms will be governed by, and construed and resolved in accordance with, United States federal law, as applicable, and by the laws of the State of New York. All lawsuits or proceedings arising out of, or relating to, these Terms will be brought in the state court located in New York County, New York or federal court located in United States District Court for the Southern District of New York, and we and you irrevocably submit to the exclusive personal jurisdiction of such courts for such purpose.
Investigations; Cooperation with Law Enforcement. GHLF reserves the right to investigate and prosecute any suspected or actual violations of these Terms. GHLF may disclose any information as necessary or appropriate to satisfy any law, regulation, legal process, or government request.
Survival. The provisions of these Terms and any applicable additional terms (which by their nature should survive the suspension/termination of your access to the Site or the termination of these Terms) will survive, including the rights and licenses you grant to GHLF in these Terms, as well as the indemnities, releases, disclaimers, and limitations on liability and the provisions regarding jurisdiction, choice of law, no class action, jury waiver, and mandatory arbitration.
Export Controls. Your use of the Site may be subject to the export control laws of the United States, including the Export Control Reform Act and its associated regulations. You are responsible for complying with all application trade regulations and laws both foreign and domestic. Except as authorized by U.S. law, you agree and warrant not to export or re-export the Site to any country, or to any person, entity, or end-user subject to U.S. export controls or sanctions.
International Issues. GHLF controls and operates the Site from its U.S.-based offices in the United States, and GHLF makes no representation that the Site is appropriate or available for use beyond the United States. If you use the Site from other locations, you are doing so on your own initiative and are responsible for compliance with applicable local laws regarding your online conduct and acceptable content if and to the extent local laws apply. We reserve the right to limit the availability of the Site and/or the provision of any content, program, product, service, or other feature described or available through the Site to any person, entity, geographic area, or jurisdiction at any time and in our sole discretion and to limit the quantities of any content, program, product, service, or other feature that we provide.
11. Contact Information
If you have any questions regarding these Terms or the Site, you may contact us by email at [email protected].

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