Drs. William Dobyns and Hannah Tully at Seattle Children’s Hospital are studying the clinical, anatomic and genetic features of children with developmental hydrocephalus (otherwise known as primary, congenital, or non-acquired hydrocephalus). Their team is seeking to enroll additional patients in their research studies.
Families interested in participating are encouraged to contact the Seattle Children’s Research Institute. You will be given information about the study and they will obtain informed consent by phone or email. If you agree to participate, they will ask you to send clinical information about your child, as well as a copy of any brain MRIs your child has had. These will be reviewed and you can request a summary of their assessment. They will also provide kits for you to collect saliva samples from your child and other family members to send back to the Institute. DNA will be extracted from these samples and be tested for possible new genetic causes of hydrocephalus.
Not enough is known about what causes developmental hydrocephalus, how best to treat it, and how to counsel families about what to expect. Therefore, the Institute anticipates that their research will expand the current knowledge and help develop improved medical and counseling guidelines for affected patients and their families. Please note that the research may or may not benefit your child directly.
Contact information for enrollment or questions about the research program is below.
Research Contact Information:
Clinical Research Associate
Seattle Children’s Research Institute
Center for Integrative Brain Research
1900 Ninth Avenue, M/S C9S-10
Seattle WA 98101
Phone (206) 884-1277
Fax (206) 884-1210