We are asking you to enter information into The Siegel Rare Neuroimmune Association Registry (which we will call SRNA Registry).
It is important that we explain what is involved and what will be done with the information you provide. This section contains answers to questions about the registry and how it might benefit you and our community.
SRNA membership and consent are required to join SRNA Registry. You will be asked to read SRNA Registry consent form. After you read the form, you will be asked a series of questions to confirm that you understand the study. Then you will be asked to sign an electronic consent form. Parents or legal guardians can sign on behalf of their child or on behalf of an adult who does not have the ability to consent for him/herself. Participation is voluntary.
If you have questions that are not answered in this document, please contact SRNA’s Associate Director of Research and Education, GG deFiebre, at firstname.lastname@example.org.