How To Enroll...

Patients may be referred to the Registry either by their physician or by their parents.


Referral by a physician

If a physician refers a patient to the Registry, minimal confidential demographic data about the patient will be obtained and our office will then send the referring physician a "Consent Form" and a "Medical Record Release Form", which the referring physician should give to the parents. The parents will complete these two forms and return them to our office. The parents will then be contacted by telephone by the Registry nurse so that questions about the study and the consent form can be answered. After informed consent is obtained, the parents will then be sent a "Parent/Guardian Questionnaire" for completion and return to our office. After this questionnaire has been returned to the office, a follow-up telephone interview will be conducted to clarify any of the information that was submitted. Medical information about the patient will also be obtained via a "Physician Chart Review Questionnaire" that will be sent to the patient’s physician along with a copy of the "Medical Record Release Form".


Referral by the parents

If the patient’s parents make the initial contact with our office, the Registry protocol and consent process will be discussed with them by telephone, and if they agree to participate, they will be sent the "Consent Form" and "Medical Record Release Form" for completion and return to our office. Once received, we will then send the parents a "Parent/Guardian Questionnaire" for completion and return to our office. After this questionnaire has been returned to our office, a follow-up telephone interview will be conducted to clarify any of the information that was submitted. Medical information about the patient will also be obtained via a "Physician Chart Review Questionnaire" that will be sent to the patient’s physician along with a copy of the "Medical Record Release form".


The type of information that are we requesting

The "Parent/Guardian Questionnaire" and "Physician Chart Review Questionnaire" have been developed to allow us to obtain information concerning the variety of clinical presentations of children with pyridoxine-dependent seizures, the response of the disorder to various doses of pyridoxine, the imaging (CT and MRI scans) findings and EEG characteristics of the condition, and the long term developmental consequences of pyridoxine-dependency. As the Registry will be a longitudinal project, it is anticipated that additional information about the patient’s seizure control, medications, imaging and EEG results and developmental/educational status will be requested from the parents and the child’s physician every two to three years.


To enroll in the Registry, or for more information, please contact us

Pyridoxine-Dependent Seizures Registry
c/o Dr. Sidney M. Gospe, Jr.
Seattle Children's Hospital
4800 Sand Point Way NE
Neurology, B-5552
Seattle, WA 98105
Telephone: 206-987-2078
Fax: 206-987-2649
E-Mail:
pyridoxine@seattlechildrens.org


The Pyridoxine-Dependent Seizures Registry has been approved by the Institutional Review Board of Seattle Children's Hospital.