Succinic Semialdehyde Dehydrogenase Deficiency(SSADH) Database
For a copy of an SSADH database questionnaire you can email [email protected]
Phillip L. Pearl M.D. is a child neurologist at Children's National Medical Center, Washington D.C., Associate Professor of Pediatrics and Neurology at the George Washington University School of Medicine and is a member of the PND Medical and Scientific Advisory Board. Dr. Pearl works closely with K. Michael Gibson PhD, Director Biochemical Genetics Laboratory, Oregon Health Sciences University and has been instrumental in diagnosing and treating children with SSADH. Recently Dr. Pearl has initiated the development of a clinical database for patients with SSADH.
The goal of the database is to create a central source for clinical information on patients with SSADH. This information will provide clinicians and investigators with important data such as patient history, signs and symptoms, treatments and standards of care. Presently there is no central source for this data and it is imperative that this information be available to assist with the investigation of future treatment modalities.
Participation is entirely voluntary and anonymous. Any information obtained from the database will be done in an anonymous fashion in order to protect the confidentiality of patients and families.
If you would like to participate in the database or would like further information about this effort please contact:
Phillip L. Pearl M.D.
Department of Neurology
Children's National Medical Center
111 Michigan Avenue, NW
Washington, D.C. 20010-2970
Phone: (202) 884-2120
Fax: (202) 884-5226
E-mail: [email protected]