Global MSA/AMS Research Registry Hub

People with MSA and related brain disorders face significant challenges finding support and learning about current research, especially given the rarity of the disease. Moreoever, patients often need extra help locating suitable resources. The Global Research Registry Hub is designed as a way for patients and caregivers to build supportive networks and to connect with vital research opportunities worldwide. The MSA Research Registry is now open for sign-ups. Scroll to the bottom of this page for further information.

 

Note:

The two apps are currently under review for further development. Stay tuned for a launch of the new apps in 2021.

 

   

Research Frequently Asked Questions (FAQ)

(Answers and More Questions Coming Soon)

What is a clinical trial?

GOSH is an acronym for Global Online Support Hub. The hub is designed to be used by people who have been diagnosed with or are a caregiver of someone with a brain disorder.

What is the process for drug approval?

Support Group Sessions (“SGS”) are conducted via computers and the internet – they are a combination of video conferencing and text chat. Each session is scheduled and moderated by a volunteer who has personal experience in dealing with a brain disorder. Use of this service is FREE for non-commercial use for any adult (18 years of age or older) that is either a patient diagnosed with a brain disease or a current caregiver of a patient with a brain disease. The only users exempt from this particular use requirement are the volunteers who staff the GOSH.

If I am a patient, how can I participate in a clinical trial?

Your privacy is of the utmost importance to us. We have designed our Guidelines to allow us to make important disclosures about how you can use the GOSH website and applications to communicate with others. Our guidelines also advise you what information we collect and how we use that information. We encourage you to read the Guidelines and utilize them to help you make informed decisions.Most organizations or religious groups that provide support groups for the particular community they serve are non-profits, staffed by volunteers and therefore, do not meet the definition of entity covered by the Health Insurance Portability and Accountability Act (HIPAA), such as a “health care provider” (45 CFR 160.103). Participants in support groups may expect that whatever they disclose to others to be held in confidence by the group administrators and other participants, and we ask participants to honor this code of confidentiality, but such disclosures are not be covered by HIPAA regulations given the nature of a support group. HEALTH INFORMATION DISCLOSED BY AN INDIVIDUAL USER REGARDING THEIR HEALTH TO ANOTHER USER OR TO AN EXTERNAL PARTY FALLS OUTSIDE THE SCOPE OF “INDIVIDUALLY IDENTIFIABLE HEALTH INFORMATION” AND THUS, IS NOT HIPAA PROTECTED HEALTH INFORMATION (PHI).

Do you have a list of clinical trials?

We place extraordinary importance on your privacy and protecting it while you use GOSH and its applications. As part of our desire to provide security for your use of GOSH, we also need to be confident of your identity so that administrators know to whom they are talking. Thus, your name, contact information and diagnosis will be asked during the sign-up process. You will also be required to read and agree to the Guidelines (which include the Terms of Use and other policies) before your registration is activated. However, your use of GOSH, it’s associated social media groups and affiliated charity websites or GOSH mobile applications, implies consent to our Terms of Use, Privacy and other Guidelines, including the SGS Code of Conduct.

Does it cost anything to participate in a clinical trial?

Any information discussed, posted or exchanged between participants using GOSH, associated websites or applications is for informational purposes only and should not be used for diagnosis, treatment or a recommendation concerning any medical condition. Defeat MSA Alliance has used all reasonable care in providing the limited information on its websites, including whatever is provided via this Hub and each Support Group Session (SGS) but makes no guaranty or warranty as to its accuracy. Every visitor to this GOSH, associated websites, chat rooms or the applications should consult with a doctor or other health care professional for diagnosis, health tests and/or treatment of any medical condition.

Can I get paid to participate in a clinical trial?

At present, the established regional groups reflect the known regions where patients targeted by the hub live. Overtime, it is likely that the number of groups and what regions they cover will change as more patients are identified. If you would like to submit a request for a video chat group for your region, we encourage to do so by requesting to add a group. There is a button on the homepage that will take you to information on how to submit a request. A group may be added depending on the number of users (patients and/or caregivers) in your area. We will consider all requests and we will do our best to connect you with others in your region.

How can I get current information on clinical trials?

Since the GOSH is designed to serve various brain disease communities, the only people permitted to be on camera are patients that are diagnosed with one of those disorders and/or their caregivers, who are 18 years of age or older. At no time, should individuals that have not consented to being on camera be intentionally or inadvertently viewable on camera. Efforts should be made to point the camera upwards at the head and face. Cameras that are directed toward walls or any place that is not at a user’s face will be stopped from broadcasting, to allow for the user to redirect his/her camera. Users that violate this policy may be kicked from the support group session. Repeat offenders will be banned from the GOSH.

If I live outside of the US, how can I participate in a clinical trial?

Every user in the chat session has the ability to turn off his/her camera at any time and still remain in the chat session. A user can also request his/her camera to be blocked from viewing by the moderator. At present, in the current GOSH version, it is impossible for a user to block another viewer from his/her camera without blocking all viewers in the group. We are working on providing this option in the next version of the GOSH.

The Hub is entirely funded by individual donations and by the sponsoring charities. By clicking on the Hub donation banners and donating, every contribution is tax deductible and will help keep this resource available. Our records will show you came through the Hub and if you earmark your donation as Patient Support, it will be used to support the Hub. We are charged for video upload and download bytes, chat texting services, Hub development and Hub maintenance. Any and all donations would be greatly appreciated. Large donations from individuals or companies will be publically thanked and listed on our Hub donors page. If you want to support the Hub, with a large donation, please send us an email support@brainpatient.org

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MSA RESEARCH REGISTRY & SUPPORT HUB


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