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MSS Registry FAQs


Q: How long does it take to register?

A:  About 20 minutes would be typical.

Q: Do I need to have a Sil1 mutation to register?

A:  No.  The questionnaire will ask how the diagnosis was made: genetic testing, physical exam, imaging techniques, etc.  You can select as many answers as appropriate.  We want our registry to reflect all people with a clinical or genetic diagnosis of MSS.

Q: Are there age restrictions?

A:  No.  Children and adults of any age can be registered.  You will select that you are either:  (1) registering a child as their parent or guardian, (2) registering yourself (a competent adult), or (3) registering an adult for whom you have legal responsibility.

Q: What if I have more than one child with MSS?

A:  You will register each of them separately.

Q: Can I register someone who is deceased?

A: Yes.  The questionnaire will ask if the person is living or deceased.

Q: Is the questionnaire available in other languages?

A:  Not at this time.  Please email us what language you read and write so we can assess what translations would be most beneficial.

Q: What if I change my mind and no longer want to participate?

A: You can terminate your participation at any time.

Q: Can I update my answers in the future?

A: Yes, at any time.  You will also be reminded to update you questionnaire annually.

Q: What if I don’t know the answers to some questions?

A: Just answer all questions to the best of your ability.  We realize that in many cases the diagnosis was made many years ago.


Learn more about CoRDS (including privacy protections)

Begin the registration process