PRIVACY STATEMENT

Information Collection and Use:

The Hydrocephalus Association is the sole owner of the information collected on this site. We will not sell, share, or rent this information to others in ways different from what is disclosed in this statement.

No personal identifiable information will be released to third parties. Once information is entered, personal identifiers such as names and email addresses will be stripped away from the other information on the survey.

No individual will have access to the personal information of any individual completing the survey.

Cookies
A cookie is a piece of data stored on the user’s hard drive containing information about the user. No cookies are used in the survey database.

Log Files
We use IP addresses to analyze trends, administer the site, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.

Links
The Hydrocephalus Association survey database does not contain links to other sites.

How the Information Will Be Used:

This database has been created by the Hydrocephalus Association to help the medical community identify better ways to treat hydrocephalus and provide improved medical, social, and educational resources to families and individuals.

We have created a database that collects aggregate information. This information may be released to approved and registered third parties, such as individuals conducting research on hydrocephalus.

For example: A researcher may want to know how many respondents have had shunt revisions. The database would provide this information in terms of total numbers of people who stated they have received shunt revisions. This information could also be narrowed down to a particular state, city, or zip code, or by age of patient.

The Hydrocephalus Association Medical Advisory Board has approved the protocols of how information will be accessed and shared by third parties.

The Hydrocephalus Association will carefully monitor all requests for access to this information and for what purpose it is to be used.

Personal Information:

No one accessing the database will be able to recognize or identify a particular individual whose information is on the database. Once information is entered, the personal identifiers such as names and email addresses will be stripped away from the other information requested on the survey.

During registration, you will be asked to give contact information (name, address, and email address). This information is optional, and you do not have to provide it in order to participate in the survey. However, this information will be helpful if you want to participate in future surveys and/or receive statistical information.

You will also be asked to provide the last 4 digits of the patient’s Social Security number and date of birth. This is to insure that we do not receive duplicate information on the same person. This information is mandatory to complete the survey.

The Hydrocephalus Associasion survey database does not contain links to other sites.