Welcome to the Hydrocephalus
Association Survey.
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, that is about to change.
The first step of the Database Project is the launching of the Hydrocephalus
Association Survey in an effort to collect comprehensive
information from individuals and families dealing with hydrocephalus. By
completing the survey, you will be helping the medical community, researchers,
doctors, agencies and the Hydrocephalus Association identify better ways to
treat hydrocephalus and provide improved medical, social and educational
services and, ultimately, achieve better outcomes. Our goal is a database of at
least 5,000 people, and it all begins with you.
Privacy: 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 office (415-732-7040; toll-free 888-598-3789) or
email us at info@hydroassoc.org.
It will take approximately 10 minutes to complete the survey on-line. The survey
has been designed so that either an individual with hydrocephalus or a family
member can complete a survey. You also have the option of printing out the
survey then faxing or mailing it to the Hydrocephalus Association once it is
completed. If you need assistance or would prefer to have the Association staff
assist you in completing the survey, please call our office to schedule a phone
appointment, 10am-3pm, Monday-Friday, PST, 415-732-7040 or toll-free
888-598-3789.
Information you will need to get started: Please have the last 4 digits
of the Social Security number and the birth date of the individual with
hydrocephalus. This information will prevent the duplication of information on
the same person.
