How We Collect Personal Information
Self-Provided Information. The FTD Disorders Registry collects self-provided information when you register online for the Contact Registry or the Research Registry, complete a survey, and submit an online form.
Automatically Collected Information. Session cookies are used to collect an engagement history of your interactions with the Registry’s emails, social media accounts, and website. The Registry’s survey software automatically collects certain technical information.
Use of Personal Information
The FTD Disorders Registry is committed to only collecting the information necessary to conduct activities required by law, by consent, and for legitimate interests.
The personal information we collect may be used for one or more of the following purposes:
- To create and validate your Registry account (i.e. age validation, information required by the NIH to generate a Global Unique Identifier).
- To track the number of unique FTD cases in the Registry and link-related accounts (dyads/triads).
- To send newsletters and other information regarding frontotemporal degeneration (FTD) that may be of interest to you.
- To send targeted communications for resolution of account issues or in response to contact/material requests.
- To provide individualized clinical trial information based on geography and study-specific criteria.
- To perform population studies within the Registry and/or stratify the Registry population.
- To inform and shape medical research for FTD by providing de-identified data to projects that pass the Registry’s rigorous review process.
- For research and analysis aimed at improving website user-experience.
- For research and analysis aimed at improving Registry communications.
- To troubleshoot user issues with survey software.
- To respond to law enforcement requests and as required by applicable law, court order, or governmental regulations.
Personal Information We Collect
The categories of personal information we collect and the purposes (from the list above) for which they may be used are noted in the PDF file that you can view online or download by clicking the button below.