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Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: A Workshop

Completed

The Forum on Neuroscience and Nervous System Disorders hosted a public session at the 2015 Alzheimer's Association International Conference on July 20 on assessing the impact of applications of digital health records on Alzheimer's disease research. Presentations examined clinical trial design and digital health record collaborative efforts in Europe, reviewed lessons learned from medical records linkage in the Rochester Epidemiology Project, examined the Medicare claims-based methods for studying digital health records, and examined the ethical, societal, and legal considerations for applying digital health records on Alzheimer's disease research.

Description

An ad hoc committee will plan a public session in workshop format at the 2014 Alzheimer’s Association International Conference on Alzheimer’s Disease. This workshop will explore how digital health records can be applied to support research on Alzheimer’s disease. Specifically, presentations and discussions will be designed to help participants:

  • Examine current and future applications of digital health records and their impact on clinical trial design;
  • Consider scientific opportunities and challenges associated with applying digital health records to inform Alzheimer’s disease research design and methodologies;
  • Discuss infrastructure needs and lessons learned from other medical-records linkage systems; and
  • Explore what kinds of ethical, societal, and legal issues should be considered in applying digital health records on Alzheimer’s disease research.

The committee will develop the agenda for the workshop session, select and invite speakers and discussants, and moderate the discussions. An individually authored workshop summary based on the presentations and discussions held during the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.

Collaborators

Committee

Daniel J. Burch

Member

Patricia (Tia) Powell

Member

Sponsors

Department of Health and Human Services

National Science Foundation

Other, Federal

Private: For Profit

Private: Non Profit

Staff

Diana Pankevich

Lead

Clare Stroud

Lead

Sheena Posey Norris

Major units and sub-units

Institute of Medicine

Lead

Board on Health Sciences Policy

Lead

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