Boston Children's Database for SSADH Patients
In addition to registering with the SSADH Association, we are asking SSADH patients to share their information with an additional registry.
Phillip L. Pearl M.D. is Director of Epilepsy and Clinical Neurophysiology at Boston Children's Hospital, and Professor of Neurology at Harvard Medical School and a member of the SSADH Association's Medical and Scientific Advisory Board. Dr. Pearl has been involved with SSADH patients for the majority of his carrier. He plays a critical role in both SSADH research and the trials at the National Institutes of Health (NIH).
Dr. Pearl has created 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. It is imperative that this information be available to assist with the investigation around the world for future treatment possibilities.
Additionally, accumulating this information allows us to map the progression of this disorder for the medical community. It is vital to account for each patient when dealing with a ultra-rare disorder like SSADH.
Participation in the patient database 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.
Once you have filled out the initial survey, you will atomically get follow up survey’s sent to the email address provided in the survey every 6 months.
Please clink this link to fill out the survey.
If you have further questions regarding the survey please contact:
Melissa DiBacco, M.D.
Postdoctoral Clinical Research Fellow
Department of Neurology – Epilepsy Division
Boston Children’s Hospital
333 Longwood Avenue 4th Floor
Boston, MA 02115
P: 617-919-4617 (x44617)