Dandy-Walker Research Study

Drs. William Dobyns and Kathleen Millen at the Center for Integrative Brain Research at Seattle Children's Hospital are studying clinical data and DNA samples from patients with Dandy-Walker Malformation (DW) and their families. Research done by Dr. Dobyns and Dr. Millen has identified 3 DW genes. This has increased our understanding of the causes of DW, improved diagnosis, and may lead to new therapeutic options. Much research remains.

Families and physicians interested in participating in our research are encouraged to contact us. We will begin enrollment by obtaining informed consent, collecting and reviewing clinical reports, brain MRI images and photographs. Summaries of our assessments, as well as clarification of the diagnosis in some cases, will be made available to families and physicians on request.

Once we have reviewed medical records, we will initiate genetic analysis. Families interested in this study are encouraged to send us samples from one or more different tissues such as saliva, blood, or skin. Saliva or blood samples from the biological parents may be requested as well. Details will be provided upon enrollment. There are no travel requirements or additional costs associated with participation in the research. Our research may or may not benefit your child.

Contact information for enrollment or questions about our research program is below.

Research Contact Information:

Dandy-Walker Research Study
Seattle Children's Research Institute

Center for Integrative Brain Research
1900 Ninth Avenue, M/S C9S-10
Seattle, WA 98101

Email: dandywalker@seattlechildrens.org
Phone (206) 884-4102
Fax (206) 884-1210