The Global MSA Registry (GloMSAR) is a joint project between the Autonomic Disorders Consortium, the National Institutes of Health and the MSA Coalition.
The overall goals of the contact registry are to:
- Connect patients and keep them up to date on
clinical trial opportunities
- Administer surveys to better understand the features of MSA
- Enable us to contact eligible patients to participate in trials and speed up the testing of potential therapies.
The Global MSA Registry is free of charge. Patients with MSA or their caregivers, from all over the world, can register themselves online and by filling out standard information, they can help us understand disease traits.
Click the button below to join the RDCRN Autonomic Disorder Consortium (ADC) Contact Registry. During the registration process you will be asked to select Multiple System Atrophy and this will connect you to GLOMSAR.
February 8, 2017 at 10:45 pm
I have PSP disease
March 22, 2017 at 6:15 pm
Very sorry for the late reply. And we’re very sorry to hear you have PSP. Unfortunately, PSP is neither a synucleinopathy nor part of the RDCRN Autonomic Disorders Consortium.
If we could be of more help, please don’t hesitate to let us know.
Thanks a lot for reaching out to us though.
Dysautonomia Center, NYU
February 11, 2017 at 8:21 pm
https://m.youtube.com/watch?v=_7QAqh_9cY4 have msa-c
February 11, 2017 at 8:23 pm
I have for 3 years
February 21, 2017 at 8:22 pm
Thanks a lot for reaching out to us.
We would like to suggest that you register at the Rare Disease Clinical Research Network (RDCRN) Contact Registry, if you haven’t done so yet:
February 16, 2017 at 12:12 pm
Rocchina Perruzza 18 agosto 1953
Malata di MSA tipo p
March 22, 2017 at 6:10 pm
May I direct you to the RDCRN Autonomic Disorders Consortium
Contact Registry (https://contactregistry.rarediseasesnetwork.org/Registration/Registration/RegStart/3573), which includes MSA? Perhaps you can ask your friend to register. It would be great to include her in the registry so that she could be contacted for future activities.
Thanks a lot and don’t hesitate to reach out to us for further questions.
Dysautonomia Center, NYU
March 22, 2017 at 12:51 pm
Until I found out about this registry and support group, I felt so alone!!
March 22, 2017 at 6:07 pm
Thanks a lot for reaching out to us, and for letting us know how the support group has been helpful to you.
May I ask if you have registered at the RDCRN Autonomic Disorders Consortium
Contact Registry? We are currently planning research-related activities (e.g., survey, clinical trials) that may be of interest to you, and it would be great to include you in the list of possible participants.
Thanks and sincerely,
Dysautonomia Center, NYU
April 19, 2017 at 12:23 am
HELP HE IS DYING
October 8, 2018 at 9:09 pm
HELP: Energized by the GLOMSAR discussion at the recent MSA Coalition Conference in SF, I’ve arranged to speak with my local Kaiser neurologist regarding coordinating MSA patients, getting them registered with Glomsar,
and generally establishing a coordinated team approach. SO, I decided to register myself and find the process confusing and can’t be recommended. I don’t register with Glomsar but with the Rare Diseases registry which does not allow me to register the patient, but only the care giver and at no place was there an application asking for presentation symptoms, date of diagnosis. etc. Dr. Lucy implied that the registry would track the presentation and course of the disease. I find NO opportunity to do that and if it’s there it’s too buried for the average individual.
They asked only if you were a patient or a caregiver (not spouse) and then gathered all MY information saying that I’d be able to enter the patient later, but it was never findable.
If I’m going to talk my Kaiser neurologist into doing this, I need a more functional registration website. Dr. Lucy commented that only 687 patients were registered… well I know why now, it’s too hard to get to it.
R. Jean Nokes-
October 8, 2018 at 9:15 pm
Hi, please email us at email@example.com and we will be happy to work with you to make it happen. We can put you in touch with our team and find a solution. Thanks for the feedback
October 8, 2018 at 9:10 pm
November 3, 2018 at 12:08 am
My father has just been diagnosed with MSA. I am at a loss and cannot accept it. My mother and I are the caregivers. It is progressing sooooo quickly
December 3, 2018 at 3:25 pm
I registered the patient name and myself as the guardian to the patient for the GLOMSAR MSA registry.
Should i be recieving a confirmation for the registration?
January 3, 2019 at 9:56 pm
Where can I find details of the GDPR – General Data Protection Regulation for the GLOMSAR register?
Check the RDCRN’s information for the contact registry. GLOMSar is run in this platform which is compatible with US and European laws for data protection.