GIST Patient Registry Online

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GIST Patient Registry Online is intended to be used by GIST patients and caregivers only. Data provided is used for rare disease research.
If you would like a demo of GIST Patient Registry Online, please contact us at contact@gistpatientregistry.org

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Terms and Conditions of Use

Effective June 17, 2016
The following terms constitute an agreement between you and the operator of www.gistpatientregistry.org (the “Site”). This agreement governs your use of the Site, as a registered member as described below: By accessing or using the Site, you agree to be bound by the terms of this Agreement.

About the Site

An organization called the Life Raft Group (LRG) wants to find out more about a cancer called Gastrointestinal Stromal Tumors (GIST). To collect this information, LRG has created GIST Patient Registry Online, an online research registry.
Scientists studying GIST and related diseases need more accurate, real-world information to understand how the disease affects people. The purpose of the Life Raft Group GIST registry, also known as GIST Patient Registry Online, is to collect and store medical and demographic information, including family history of cancer, from individuals within this disease community. Information from patients in this registry will be used for medical research to better understand GIST.
Members may also benefit from using the Site as a place where they can store and review details of their disease and treatment. Tracking disease progression statistics and medication history from a central location may be a useful tool to patients, caregivers and the medical professionals they work with.

Membership Eligibility

To become a member GIST Patient Registry Online requires that you are either a diagnosed GIST patient or caregiver for a patient with said disease.
Children under the age of 17 are prohibited from registering as members. By registering as a member you represent that you are age 17 or older. Parents or guardians of a child who is a GIST patient may open an account as a caregiver to contribute medical updates on behalf of their child. Children must be at least 7 years of age and sign an assent form in order for their parent or guardian to register.

Acceptable and Lawful Use of Site by Members

Members shall not post or upload any information or other content on the Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography. Members may not use the Site to conduct any activity that is illegal or violates the rights of others, provide instructional information about illegal activities, or promote physical harm or injury against any group or individual.
All members represent and warrant that the information they provided when registering as a member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.

No Interference with Operation of Site

You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes. You may not post content on the Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the Site unavailable through denial-of-service attacks or similar means. You shall not collect information about our members to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your membership account to take such actions.

Privacy

During the study, the investigator and the study staff will use, collect, and share health information about you (your “records”). Your records may include any information about you that you provide, such as your name, address, phone number, and medical information. The registry aims to share detailed medical and other information with researchers, while still protecting your privacy. This is done by hiding the name, address and other “identifying” information from the researchers. We call this information “de-identified” because it has been removed of all personal identifiers. Your personal information (such as your name, address, or other information that identifies you or your family) will be labeled with a code number and stored in a secure place and protected with a password. Only authorized people who work in the registry will know the code and be able to identify you if needed. The de-identified data collected and compiled by the registry belongs to the GIST community. The Life Raft Group is the guardian of the information contained within the registry. If a researcher wants to access your name or other identifying information, the study staff will ask your permission first.
Instances where a member’s data, including personal information, may be used and disclosed include, but are not limited to, the following:

  • Internally, as needed, for research, maintenance and operation of the site in order to create the best possible tools and functionality for patients.
  • In the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the member.
  • Where required by law or to comply with legal process.
  • In the event GIST Patient Registry Online goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, member data, including personal information, might be among the assets transferred. Members will be notified both via e-mail and a notice posted on this site of any such change in ownership or control.
GIST Patient Registry Online holds the safety of its members in highest regard. To this end, we will not share or sell a user’s personal information (such as name and mailing address that could be used to identify you) for commercial purposes. GIST Patient Registry Online does reserve the right to share aggregated member data (e.g. totals, trends and percentages) that are stripped of individual account holder identifiers. Information from members will be used for medical research to better understand GIST. Scientists studying GIST need more accurate, real-world information to understand how the disease and treatments affect people.

In the course of using GIST Patient Registry Online, members may voluntarily share information that could be used to reasonably identify them including name, images and e-mail address. When a member chooses to share personal information or images they accept responsibility for this waiver of their privacy.

Digital Millennium Copyright Act

If you are a copyright owner or an agent thereof and believe that any User Submission or other content at this Site infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works at our Site; (iii) a description of the location on the Site of the allegedly infringing material(s); (iv) your address, telephone number, and e-mail address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
If a User Submission that you submitted has been removed as a result of a notification as described above and you believe that such a User Submission or portion of a User Submission was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the User Submission content at issue.
GIST Patient Registry Online’s designated Copyright Agent for notice of claims of infringement is:
GIST Patient Registry Online
Michelle Durborow
155 US Hwy 46 Suite 202
Wayne Plaza II
Wayne, NJ 07470
Telephone: 973-837-9092
E-mail: copyright@gistpatientregistry.org

Only notices of alleged copyright infringement and requests about the counter-notification procedures should go to the Copyright Agent; any other feedback, comments, requests for technical support, and other communications should be directed to GIST Patient Registry Online at contact@gistpatientregistry.org. You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.

Member Password and Login Identity

You are responsible for maintaining the confidentiality of your member password and login, and are fully responsible for all activities that occur under your password or account. All account holders are expected to use GIST Patient Registry Online for legitimate, non-commercial reasons and agree to respect the privacy and preserve the dignity of all site participants. GIST Patient Registry Online reserves the right to remove or suspend any user account that, knowingly or unknowingly, does not comply with these standards of conduct in order to preserve the privacy and well-being of our other members. You agree to immediately notify GIST Patient Registry Online of any unauthorized use of your membership password or login or any other breach of security.

Links to Other Websites

GIST Patient Registry Online may contain links to other websites that are not under the control of GIST Patient Registry Online. The inclusion of any link does not imply endorsement by GIST Patient Registry Online of such site and GIST Patient Registry Online is not responsible for the content of such linked sites.

Membership Termination

You agree that GIST Patient Registry Online may, with or without cause, immediately terminate your GIST Patient Registry Online membership or limit or terminate your access to the Site without prior notice. Grounds for termination by GIST Patient Registry Online of a member's membership and use of the Site may include but are not limited to: (a) breaches or violations of this Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated membership cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. GIST Patient Registry Online has no obligation to maintain, store, or transfer information or data to you that you have posted on or uploaded to the Site.
Your participation in the registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the registry. If you want to stop being in the registry, let the investigator or study staff know. You are free to opt-out of participation in the study by filling out an opt-out form, by phone or through the website. If you decide to withdraw from the registry, the investigator or staff may ask you some questions about your experience being in the registry. You are still eligible to take part in other Life Raft Group activities even if you choose to leave this registry.

Modifications to this Agreement

We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this Site. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date.

Fees

Membership with GIST Patient Registry Online is currently free. GIST Patient Registry Online Inc. reserves the future right to change the terms of this Agreement and charge for membership and/or to provide additional optional services for a fee.
This is not a treatment study. Expenses related to your condition and its therapies, doctor charges, other office visits, or other tests are not paid by the registry. You or your medical insurance provider will be responsible for all costs associated with your regular medical treatment.

Disclaimer of Warranties

The Site and the content and services made available on the Site are provided on an “as is” and “as available” basis. GIST Patient Registry Online does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Site, the Site content, or any advice or services provided through the Site to the extent permitted by law. GIST Patient Registry Online does not warrant that access to the Site or its content or services will be uninterrupted or error-free or that defects in the Site will be corrected.

Limitation of Liability

Under no circumstances shall GIST Patient Registry Online, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this Site or due to your reliance on any of the content contained or the services provided on the Site.

Indemnification

You agree to indemnify and hold harmless GIST Patient Registry Online, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.

International Users

GIST Patient Registry Online makes no claims that information on the Site is appropriate or may be applicable outside of the United States. Personal information (“Information”) that is submitted to this Site will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our above stated privacy policy. If you are a non-U.S. user, you acknowledge and agree that GIST Patient Registry Online may collect and use your Information and disclose it to other entities outside your resident jurisdiction. In addition, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction as detailed in our privacy policy. If you do not consent to such transfer, you may not use this Site.

Member Notices

If you register as a member, you agree that GIST Patient Registry Online may send notices to you by e-mail at the e-mail address you provide when registering to become a member (or which you later update using the functionality of the Site).

Governing Law and Venue

This agreement shall be governed by the laws of the State of New Jersey and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with membership in or use of the Site, shall be litigated exclusively in the state and federal courts residing in the State of New Jersey, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the State of New Jersey.

No Medical Advice

GIST Patient Registry Online does not endorse drugs, diagnose patients or recommend therapy. The site and the content of GIST Patient Registry Online are not provided in the course of a professional relationship between a health care provider and a patient and are not intended to create any patient relationship, nor should they be considered a replacement for consultation with a health care professional. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. As a user of or visitor to GIST Patient Registry Online you understand and agree that the site, the content any other information that you learn are not intended, designed or implied to diagnose, prevent or treat any condition or disease. You should always consult with a physician if you have questions regarding a medical condition.

Miscellaneous Terms

GIST Patient Registry Online® and the GIST Patient Registry Online logo are trademarks of the Life Raft Group. You agree not to display or use these trademarks in any manner without GIST Patient Registry Online's prior, written permission.
GIST Patient Registry Online may assign this agreement at any time to a subsidiary or parent company or to a successor to its business as part of a merger or sale of substantially all of its assets. You may not assign or transfer this agreement.
Every effort has been made to ensure that the data and information provided on the Site is accurate, up-to-date, and complete, but no guarantee is made to that effect. Information has been provided for use by researchers and members. GIST Patient Registry Online does not warrant that uses outside of the United States are applicable.
If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.
Copyright 2016 GIST Patient Registry Online. Please consult with your doctor, nurse or pharmacist if you have questions about your health and condition.
For any questions or comments, or to report violations of this agreement, contact us at:
GIST Patient Registry Online
Attn: User Agreement Issues
155 US Hwy 46, Suite 202, Wayne Plaza II
Wayne, NJ 07470

I agree to the Terms and Conditions

E-Consent

Please read the following, sign below, and then click "Submit" to participate.

WHAT IS THIS REGISTRY STUDY ABOUT?
An organization called the Life Raft Group (LRG) wants to find out more about a cancer called Gastrointestinal Stromal Tumors (GIST) as well as other cancers that may or may not be related to GIST. To collect this information, LRG has created a research registry.

A registry is a place where medical information, family history and other related information from patients is collected and stored for medical research. The purpose of the Life Raft Group GIST registry is to collect and store medical information and other information from individuals with the same disease or other cancers that share commonalities such as molecular targets, treatments, or other factors. Information from patients in this registry will be used for medical research to better understand GIST and these other diseases. Scientists studying GIST and these other diseases need more accurate, real-world information to understand how these diseases affect people.

People with GIST and other related or unrelated diseases are being asked if they would like to participate in the Life Raft Group registry. The Life Raft Group GIST registry is also linked to a tissue bank, which is a place that stores tumor tissue, blood or other samples from patients. You may also be asked to provide samples to the tissue bank. You would need to read and sign a separate consent form about the tissue bank. You do not have to take part in any other Life Raft Group activities, including the tissue bank and online forums, to take part in this registry.

If you have any questions about or do not understand something in this form, you should ask the investigator or his/her study staff. You should also discuss this study with anyone you choose in order to better understand this study and your options.

When reading this form, please note that the words “you” and “your” refer to the person in the study rather than to a parent or guardian or legally authorized representative who might sign this form on behalf of the person in the study.


WHO IS PAYING FOR THIS STUDY?
The Life Raft Group, the sponsor of the study, is paying for this study.


WILL BEING IN THIS STUDY HELP ME?
Being in this study will not directly benefit you. Information from this study might help researchers understand GIST and other cancers better and that may help others in the future.


WILL IT COST ANYTHING TO BE IN THIS STUDY?
This is not a treatment study. Expenses related to your condition and its therapies, doctor charges, other office visits, or other tests are not paid by the registry. You or your medical insurance provider will be responsible for all costs associated with your regular medical treatment.

HOW LONG WILL I BE IN THE REGISTRY?
If you decide to be in this study and the investigator says you can be in the study, your participation will last as long as the registry is active or until you decide to withdraw from the study.

WHAT WILL HAPPEN DURING THIS STUDY?

While you are in the study, you are expected to:

  • Provide initial demographic information, such as your name, date of birth, gender, date of diagnosis and other similar information.
  • Provide details about your treatment history.
  • Provide regular updates including results of scans, current treatment (such as drug name and dose) and information related to recurrence or progression of your disease.
  • Provide information to the registry on an ongoing basis (generally whenever you have a new scan performed).
  • Tell the investigator or study staff if you want to stop being in the study at any time.
  • Your family members or a caregiver may provide updates if you are not available.


DO I NEED TO COME IN FOR STUDY VISITS?
No, this is not a treatment study. You will be asked questions about your treatment, but no in-­person visit is necessary. All information will be collected via phone interviews, via email, questionnaires or via internet updates.

The Life Raft Group maintains an electronic mailing list community (a listserv) that members are eligible to participate in. Members of this private listserv may discuss medical histories. This registry will not record information discussed by registry participants in this listserv or other social media (such as Facebook). Study staff may, however, contact you for a more formal update if staff notices a relevant posting (the posting may trigger a call or email from the study staff to confirm and authorize recording of the relevant information).


ARE THERE RISKS TO ME IF I AM IN THIS STUDY?
You will not change your regular medical care for this study. This study should not involve any physical risk to you. There is a risk of loss of confidentiality of your information. You will read more about the protection of your information later in this form. Please ask the investigator or study staff if you would like to know more about how your information will be protected while you are in this study.


WILL I RECEIVE PAYMENT?
No; participants will not receive any payment for study participation.

DO I HAVE TO BE IN THIS REGISTRY?
Your participation in the registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the registry. If you want to stop being in the registry, tell the investigator or study staff. If you decide to withdraw from the registry, the investigator or staff may ask you some questions about being in the registry. The investigator or the sponsor can remove you from the registry at any time, even if you want to stay in the registry. You can still take part in other LRG activities even if you choose to leave this registry.

For adults considering whether to be in the study:

What if I work with the study center or sponsor? What if I am a family member of someone who works with the study center or sponsor?

Study center/sponsor employees and their family members do not have to be in this study. No one should influence or pressure you to be in this study. An employee’s or his/her family member’s decision to be in the study, or to leave the study early, will not affect the employee’s job or job benefits.

For parents/guardians who are considering whether to allow their child to be in the study:

What if I work with the study center or sponsor? What if I am a family member of someone who works with the study center or sponsor?

Study center/sponsor employees and their family members do not have to let their children be in this study. No one should influence or pressure you to let your child be in this study. An employee’s or his/her family member’s decision to allow a child to be in this study, or to have the child leave the study early, will not affect the employee’s job or job benefits.


WHO CAN I TALK TO ABOUT THIS STUDY?
In the event of an emergency, dial 911 immediately.

Do not contact the Life Raft Group with emergency situations. Registry updates of your medical condition can wait.

You can ask questions about the study at any time. You can call the investigator or study staff at any time if you have any concerns or complaints. You should call them at the phone number listed on page 1 of this form if you have questions about the study procedures or other questions. The study staff cannot answer questions about the reasons or validity of your medical treatment. This type of question should be referred to your regular doctor(s).

Quorum Review reviewed this study. Quorum Review is a group of people who review research studies to protect the rights and welfare of research participants. Review by Quorum Review does not mean that the study is without risks. If you have questions about your rights as a research participant, if you are not able to resolve your concerns with the investigator or study staff, if you have a complaint, or if you have general questions about what it means to be in a research study, you can call Quorum Review or visit the Quorum Review website at www.quorumreview.com.

Quorum Review is located in Seattle, Washington. Office hours are 8:00 AM to 5:00 PM Pacific Time, Monday through Friday. Ask to speak with a Research Participant Liaison at 888­776­9115 (toll free).


WHO WILL USE AND SHARE INFORMATION ABOUT MY BEING IN THIS REGISTRY?
This section explains who will use and share your private health information if you agree to be in this study. If you do not sign this form, you cannot be in the study.

During the study, the investigator and the study staff will use, collect, and share health information about you (your “records”). Your records may include any information about you that you provide, such as your name, address, phone number, and medical information.

The registry aims to share detailed medical and other information with researchers, while still protecting your privacy. This is done by hiding the name, address and other “identifying” information from the researchers. We call this information “de-­identified” because it has been removed of all personal identifiers. Your personal information (such as your name, address, or other information that identifies you or your family) will be labeled with a code number and stored in a secure place and protected with a password. Only authorized people who work in the registry will know the code and be able to identify you if needed.

The de-­identified data collected and compiled by the registry belongs to the GIST community. The Life Raft Group is the guardian of the information contained within the registry.

If a researcher wants to access your name or other identifying information, the study staff will ask your permission first. Otherwise, your name and identifying information will only be used or shared when required by law. Your records may be used and shared with these people in the following situations:

  • The sponsor, The Life Raft Group, and people who work with or for the sponsor will use your records to review the study and to check the results of the study.
  • If there is a federal audit of the study, some government workers, such as employees of the U.S. Food and Drug Administration (FDA), will be able to see your information.
  • You release your information to other people not involved in the study.
  • You agree in writing to the release of your information to other people.
  • The investigator or study staff suspects things they must report under federal, state, or local law, including child or elder abuse, certain communicable diseases, or a possible threat to you or others. There may be other things the investigator or study staff must report under law.

You do not have a guarantee of absolute privacy because of the need to share your information. After the investigator shares your records with the sponsor and others, the laws may no longer protect the privacy of your records. The sponsor or others may share your records with other people who do not have to protect the privacy of your records. If all information that does or can identify you is removed from your records, the remaining information will no longer be subject to this authorization and may be used or shared for other purposes.

The investigator, the study staff, or LRG may use some facts about your being in this study in books, magazines, journals, and scientific meetings. If this happens, no one will use your name or other information that could be used to identify you.

You have the right to see and copy your records related to this research.

You can cancel this authorization to use and share your records at any time. If you want to cancel your authorization, you must write a letter to the investigator. If you cancel your authorization, you will not be able to continue in the study.

Even if you cancel your authorization and leave the study early, the investigator and study staff will still be able to use and share your records that they have already collected as described above.

This authorization to use and share your records expires in 50 years.


I have read and signed E-Consent Form

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