Hydrocephalus Database Registry
The goal of the Hydrocephalus Database Project is to create a national registry that will enable the Hydrocephalus Association to collect, store and synthesize information on the diagnosis, treatment and incidence of hydrocephalus, as well as its lifelong impact on individuals. Currently, there are no accepted statistics on the incidence, treatment protocols or long-term outcomes of hydrocephalus. With your help, this is changing.
By completing the survey, you will be helping the medical community, researchers, doctors, agencies and the Hydrocephalus Association identify better ways to treat hydrocephalus. Improved medical, social and educational services will, ultimately, achieve better outcomes. Our goal is a database of at least 5,000 people, and it all begins with you.
The information you submit is secure and confidential. Please take a moment to review the privacy policy. If you have any questions or concerns regarding your privacy please call the Hydrocephalus Association national office: (415) 732-7040; toll-free (888) 598-3789 or e-mail us.
It will take 10-20 minutes to complete the survey online. The survey has been designed so that either an individual with hydrocephalus or a family member can complete it. You can fax to (415) 732-7044 or mail to the Hydrocephalus Association, 870 Market Street, Suite 705, San Francisco, CA 94102. If you need assistance or would prefer to have our staff assist you, please call our office to schedule a phone appointment, 10 a.m. to 3 p.m, PST, Monday-Friday.
You will need the last four digits of the Social Security number and the birth date of the individual with hydrocephalus. This information will prevent duplication of information.