Participation Information for Alzheimer’s and Dementia Researchers

ALZ-NET will facilitate real-world data collection and evidence generation to accelerate research progress. An integrated approach to high-quality data collection from various clinical practices, health records, and a broad patient population is essential to fill knowledge gaps on long-term health outcomes for individuals evaluated for and treated with FDA-approved Alzheimer’s and dementia therapies.

In collaboration with academia, industry, federal agencies, and its own project teams, ALZ-NET ensures regulatory-grade and quality data collection. The infrastructure is designed using open data practices to support maximal data sharing, use, and application by a variety of approved users, maintaining compliance with participant protections and privacy.

ALZ-NET is designed to address current and future therapy questions, including long-term effects, responder identification, and data comparisons. It will analyze clinical outcomes and resource utilization through claims data and EHR integration. ALZ-NET will serve as a resource for evidence gathering and education across clinical and research communities, fostering innovative research and improving dementia care.

Benefits of ALZ-NET for Alzheimer's and dementia researchers

As a multi-site network, ALZ-NET is collecting data that can be used by Alzheimer's and dementia researchers to advance innovative research and improve clinical care by:

  • Creating a national infrastructure for collecting and archiving longitudinal Alzheimer’s disease and related dementia patient data, including demographic, medical, neurologic, cognitive, functional, genetic, diagnostic, imaging, biomarker, treatment, and safety data.
  • Enabling responsible sharing of de-identified data, brain imaging, and biospecimens with the research community and other partners.
  • Tracking health outcomes and resource utilization to support discovery development and health services research.
  • Building and implementing resources generated from real-world learnings to drive clinical readiness in a new phase of treatment and care.
  • A row of icons: a clipboard, a bar chart, a folder for medical information, some documents, and a group of people

Research questions ALZ-NET could address

  • What is the long-term effectiveness of a treatment?
  • What are long-term safety considerations?
  • Who is most likely to respond well and benefit from different treatments?
  • Who is most likely to have treatment-related side effects?
  • How do new treatments interact with other medications people are taking?
  • What happens when the available treatments target different aspects of the disease?
  • Which treatments might work well together as combination therapies?
  • And much more.

Available data and materials

ALZ-NET uses a set of protocols and procedures to collect, standardize and archive data and materials from participants. All data and materials are de-identified and adhere to strict standards for protecting data and privacy.

View a summary table of all data elements being collected through ALZ-NET.

Aggregated ALZ-NET study data elements will also be discoverable through the Global Alzheimer’s Association Interactive Network (GAAIN).

Data request applications will open in late 2024.

Resources for researchers

  • Find ALZ-NET resources for health systems, health care providers, and researchers regarding ALZ-NET operations, prevention and risk reduction, assessment, detection and diagnosis, treatment, and comprehensive care.
  • Research webinars from the Alzheimer’s Association and ISTAART share the latest advances in Alzheimer’s and dementia research and career development strategies.
  • Attend a scientific conference. The Alzheimer’s Association offers year-round opportunities to learn and network within the dementia science community, including in-person and virtual meetings and events.
  • The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) is an inclusive global network of scientists, clinicians, and dementia professionals. Members of this professional organization share common goals: the pursuit of knowledge, collaboration, and breakthroughs to advance the research and treatment of Alzheimer’s disease and other dementias.
  • ISTAART Voices is a podcast that navigates the intricate world of dementia research, practice, and treatment. Join us as we explore the latest research in conversation with study authors from the Alzheimer’s & Dementia® journal family. You can earn Continuing Medical Education (CME) and Continuing Education (CE) at no cost when you listen to this podcast.

Funding opportunities

The Alzheimer’s Association is the world’s largest non-profit funder of Alzheimer’s and dementia science. Learn more about ALZ-NET-specific funding opportunities.

The Alzheimer’s Association International Research Grant Program (IRGP) supports Alzheimer’s and dementia researchers at every professional stage and includes categories aimed at addressing research gaps.