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)