We were intrigued by this clinical trials study being conducted by the Division of Medical Genetics at the University of Mississippi Medical Center.
The University is recruiting parents of children with Rett syndrome to participate in a study to help determine potential causes of the increasing prevalence of the disorder. The study is being conducted using an anonymous on-line survey available to parents through a secure link.
The study consists of approximately 90 questions about the affected child, siblings, parents, and grandparents, which will take roughly 10-15 minutes to complete. Several families will also be invited to participate in a phone interview. Both the survey and the phone interview are conducted using a self-designated code to protect anonymity and patient privacy. No identifying information such as name, date of birth, address, or phone number will be asked. Only questions regarding the year of birth of family members will be asked.
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