Pyridoxine-Dependent Seizures Registry

General Organizational Information

Organization Name:

Year Established:

1999

Type of organization:

Condition(s)-specific organization

Mission Statement:

The PDS Registry was developed in order to learn more about the variety of clinical presentations of pyridoxine-dependent seizures (PDS), the response of the disorder to various dosage regiments of pyridoxine, the imaging and EEG characteristics of the disorder, and the long term developmental consequences of PDS.

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Pyridoxine-Dependent Seizures

Organizational Contact Information

Title:

Director

Degree:

MD PhD

First Name:

Sidney

Middle Initial:

Last Name:

Gospe, Jr.

Address:

Seattle Children's Hospital, B-5552 4800 Sand Point Way, NE

Seattle, WA, 98105

United States

See map: Google Maps

Phone:

+1 206 987 2078

Fax:

+1 206 987 2649

Email:

pyridoxine@seattlechildrens.org

Website Address:

http://faculty.washington.edu/sgospe/pyridoxine/

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Educational materials include:

Fact sheet(s)

Website

Bibliography

Research updates

Research Management:

Linking researchers and families

Initiating and conducting research