The American Academy of Neurology 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 personally identifiable information will be released to third parties. No individual will have access to the personal information of any individual completing the survey.
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.
We use Internet Protocol (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.
The survey contains links to participating support groups and organizations listed on the web page as well as the American Academy of Neurology. It does not contain links to other sites.
How the Information Will Be Used
This database has been created for the California NeuroAlliance to help identify barriers and challenges faced by individuals living with a neurological condition.
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 or developing policy at the state and national level.
For example, a researcher may want to know how many respondents have had trouble getting health insurance or paying for medications. The database would provide this information in terms of total numbers of people who stated they have had difficulty getting insurance or paying for medications. This information could also be narrowed down to a particular state, city, or zip code, or by age of patient.
No authorized party accessing the database will be able to recognize or identify a particular individual who has answered survey questions. Once information is entered, the personal identifiers such as names and email addresses are 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.