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The Moyamoya Foundation is partnering with Sanford CoRDS to create our global moyamoya patient registry. Sanford CoRDS supports and enables rare disease communities to build robust registries, providing researchers with the information they need to drive research forward.
This short video provides more details about CoRDS.
There are FAQ's below.
To enroll and complete the CoRDS Patient Registry Questionnaire online, you may do so by following the steps below.
The registry works best with updated versions of Safari, Google Chrome, Mozilla Firefox or Microsoft Edge and may not work as well on cellphone or tablets.
You may also complete registration on paper or by calling CoRDS at + 1 877 658 9192 or sending an email to cords@sanfordhealth.org and requesting a paper version of the CoRDS Patient Registry Questionnaire.
Setup a CoRDS Profile by clicking HERE and then complete the Activation Form..
Under disease name please select “Moyamoya Disease”.
The system will generate a username for you based on your name.
You will need to create a password and setup a security question.
Then, you can click the LOGIN button to login to your CoRDS Patient Registry Profile.
First you will complete the CoRDS Standard Questionnaire
Then you will complete the Moyamoya specific Questionnaire.
In the Patient Registry Profile, click the CONTINUE ENROLLMENT button near the top of the screen.
Then Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed.
Once you have answered all the questions, click SUBMIT
Remember, you can always login to update your answers at any time.
You should plan to update your questionnaire at least every year and after any significant changes in your moyamoya disease.
Sign-up to be added to our Global Moyamoya Patent Registry email updates distribution list.
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
Here are answers to some Frequently Asked Questions regarding our Global Moyamoya Patient Registry.
A registry is a program for collection, storage, retrieval, and dissemination of clearly defined information for a specific purpose. Data collected in this registry includes diagnosis and treatment, management of care, quality of life and longitudinal information for Moyamoya.
In one word, PROGRESS. Having a registry specifically for individuals with Moyamoya allows approved researchers to have easy access to useful medical data on many individuals with moyamoya. Since we will have already collected this data and obtained your consent to share it, researchers can begin to develop better studies much more quickly, and more easily find participants for these studies.
Everyone with Moyamoya! Participating in the Registry at CoRDS is a great way for participants to take part in helping to identify the specific causes, symptoms, and treatments of moyamoya.
Internet polls, questionnaires, and surveys are often used to collect information quickly and easily from respondents. However, to publish their results, researchers must only use information obtained in a specific way. The patient data they use must have written approval from patients to use their data this way and must adhere to strict privacy regulations. The registry is compliant with the European Union General Data Protection Regulation (GDPR). CoRDS has worked hard to ensure that researchers can use the information you provide.
CoRDS submits every questionnaire to their Institutional Review Board approval. The IRB is group that reviews the ethics of medical research studies.
Informed consent also safeguards participant data. When registering to participate in CoRDS, participants (or their representatives) are given a chance to read the consent documentation before filling out the questionnaire. For any questions, participants can call CoRDS at + 1 877 658 9192 or send an email cords@sanfordhealth.org.
If researchers receive approval to look at the registry or questionnaire responses, they will be given only the anonymous data without the identifiable information. The Moyamoya Foundation can only access your identifiable information if you choose to share it with us when you complete your registry questionnaire.
Your privacy is also protected even if you indicate that you are willing to be contacted for additional research. For example, a researcher might contact CoRDS to ask for additional information from all participants who have a specific symptom, such as loss of hearing. CoRDs would then contact every participant in the registry who said that they had loss of hearing and that they would like to participate in additional studies. CoRDS would then provide these people with the researcher’s contact information, and it would be up to the individual participants to contact the researcher to
participate in additional research. CoRDS will never provide your contact information to anyone.
Updates can be done any time and should only take 10-15 minutes. But updates should be done at least every year, after any significant change in the participant’s health, and immediately after their 18th birthday. If the participant was enrolled in the registry as a minor, their data becomes inaccessible 30 days after their 18th birthday unless and until they are re-enrolled.
Researchers will be able to compare your answers with those of others. The researchers will then be able to detect patterns, identify common symptoms and gain insights into effective and ineffective treatments. Your answers will provide a better overall understanding of (insert rare condition) and how the disease develops/progresses over the course of a lifetime.
Our goal is to collect and provide valuable information and to speed up research studies of [insert rare condition] and help start clinical trials for treatments.
The information you provide to this registry can help to:
Yes, the registry can be accessed all over the world with the link provided on our website. International participation is highly encouraged.
The information you provide will be provided to researchers studying Moyamoya Disease. CoRDS has put many safeguards into place to ensure that this information will be kept safe and confidential. The registry is compliant with the European Union General Data Protection Regulation (GDPR).
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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