The confidentiality of our participants is maintained in accordance with HIPAA guidelines. All of our study staff have completed a Human Subject Protection training course and follow procedures to ensure the confidentiality and privacy of our research families. Every effort will be made to keep your family's participation confidential.

No personally identifiable information, except for date of birth, is recorded on any of the interview, questionnaire or assessment materials. Instead, each person is assigned a unique, study-specific ID number and all of their study materials are coded with this ID number. Genetic samples will also be coded with this special ID number. We securely store all of the clinical information we collect in locked file cabinets. The genetic samples are also securely stored in our laboratory at MGH. The signed consent forms are stored separately from the clinical information in a locked file cabinet and are not marked with study IDs, so there is no way to link the clinical data with names of the participants.

Any genetic samples and clinical information that we will send to the NINDS DNA Repository will be anonymous. Although the NINDS will make the DNA samples and data available to outside researchers, these researchers will not be given any information about the identity of our subjects and they also sign an agreement that they will not make any effort to learn the identities of the subjects.

Thank you!

We want to extend a sincere thank you to all of the
families who participate in
our studies.

Everything we have learned so far and everything we will learn in the future is made possible by your generous participation.

Participate
in our research!

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