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Please consider sharing your patient experience, to help inform research
The Global Moyamoya Patient Registry is collecting information that will be shared with researchers to help provide better outcomes for moyamoya patients. Once you launch the link above, you need to create a “Respondent Account”. This account will then link to the Moyamoya Foundation Community.
Once linked to the Moyamoya Foundation Community, you will be allowed to participate in the registry where you will be asked to answer a questionnaire that will inquire about your (or guardians) experience with moyamoya.
If you do join the patient registry, you may also have an opportunity in the future to participate in research studies, that you may be eligible for.
* The registry will be open for pediatric patients (17 years and younger) in the near future. Sign-up to be notified when it becomes available below.
Dr. Edward Smith a Pediatric Neurosurgeon at Boston Childrens Hospital states how important the Global Moyamoya Patient Registry is for researchers to improve outcomes for patients
On May 6th 2022, Catherine Stratton, the Moyamoya Foundation Research Committee Chairperson announced the creation of the "Global Moyamoya Patient Registry".
Please watch the video to learn more and how you can get involved.
Abstract Details - Presented at American Academeny of NEUROLOGY 2023 Annual Meeting
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Always seek advice from your physician or other qualified health care professional.
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