Research in FD

Status: Recruiting

Research and Treatment in Familial Dysautonomia: Our goal in to provide the best clinical care for patients with familial dysautonomia (FD). The Center has a research study to understand the clinical features of FD and how they evolve over time. Participants with FD will be followed on a yearly basis (or more often) to assess their autonomic and neurological function. We will characterize the underlying causes of the clinical features with special emphasis on blood pressure and heart rate abnormalities, walking and balance, and respiratory function. We will look at the impact of standard of care therapies to determine which strategies are most effective at improving quality of life and health status.

Eligibility: The study is open to people with familial dysautonomia of any age. 

IRB#: R07-938

Sponsor: Dysautonomia Foundation, Inc

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