DIAN Expanded Registry

Join the Registry

Individuals and family members affected by the disease as well as physicians, researchers, genetic counselors and other health professionals are all invited to join the Registry.

NOTICE OF UPCOMING OUTAGE

The registry survey will be offline from 5 PM on Friday, December 14 through Sunday, December 16.
If trying to register during this period, you may return to this page after December 16 to complete the survey or contact us directly at dianexr@neuro.wustl.edu or 1-844-DIAN-EXR (1-844-342-6397). We apologize for the inconvenience while our system is updated.

Join the Patient/Family Registry »
Join the Researcher/Health Professional Registry »

Advancements in both the understanding and treatment of DIAD is only possible if individuals and families collaborate with health professionals and participate in research efforts, including clinical trials. 

The Dominantly Inherited Alzheimer Network Expanded Registry (DIAN EXR) is an international research registry for individuals with confirmed or suspected dominantly inherited Alzheimer’s disease (DIAD) in their families and for professionals and researchers involved in clinical care and research on DIAD. The Registry is managed by the DIAN Trials Unit (DIAN-TU) at Washington University School of Medicine in St. Louis. It is funded in part by grants from the Alzheimer’s Association, a consortium of pharmaceutical companies and philanthropic foundations. The Director of the DIAN EXR is Eric McDade, DO, assistant professor of neurology at Washington University School of Medicine in St. Louis and associate director of the DIAN-TU.

Purpose

The goal of the Expanded Registry is two-fold:

  1. To collect relevant information from registrants to determine eligibility for DIAD research
  2. To enroll physicians, researchers, genetic counselors and other health professionals so that they can be a part of DIAN-TU and/or DIAN research as a participating research site, as well as refer their patients to DIAN-TU/DIAN research studies

Who is eligible?

  • Individuals and family members affected by the disease or those who suspect they are affected. You are eligible to enroll in the Registry if you are aged 18 or older and have at least two generations of family members who have experienced symptoms consistent with Alzheimer’s disease before the age of 60. You do not need to know whether you yourself carry a gene mutation that causes Alzheimer’s disease. 
  • Physicians, researchers, genetic counselors and other health professionals who have research interests in DIAD and/or provide care for family members affected by DIAD. 

What are the benefits of joining?

For family members and individuals affected by DIAD

    • Learn about current research and clinical trials
    • Make themselves available as a potential clinical trial participants
    • Gain access to genetic counseling and testing as part of an ongoing research project
    • Attend international family conferences and engage in other educational opportunities
    • Receive regular updates about upcoming events and resources

Join the Patient/Family Registry »

For investigators

    • Identify potential clinical trial participants
    • Find collaborators

Join the Researcher/Health Professional Registry »

Privacy

Information in the Registry is kept strictly confidential and is securely stored. At any time, you may contact us to remove your information.

Read more about privacy »