The purpose of the INAD Contact Registry is to make sure that we have the most current contact and demographic data for individuals who have been diagnosed with INAD and other forms of PLA2G6-related neurodegeneration (PLAN) and their families. This information is being collected in order to:
- Immediately notify potential participants for research trials.
- To alert you of recent events and research findings.
- Let you specify the way you would like to be contacted.
The INAD Contact Registry data is only accessible to the INADcure Foundation’s Board of Directors, staff, Scientific Advisory Board, and ultimately appropriately qualified researchers who have applied to the Foundation, through a rigorous scientific review process, for access to the data for research or to help accelerate clinical trial enrollments.
All information is strictly confidential. It will not be sold or provided to any other sources and will be used only for the purposes stated above. Contact us with any questions by email at firstname.lastname@example.org