Convene an advisory meeting of relevant stakeholders to develop a consensus regarding eliminating barriers to sharing, integrating, and reuse of data needed to build predictive models of disease.
Develop recommendations for new policies and incentives to enable open, reproducible, and translatable research. These should address:
- removing barriers to combining data from multiple sources and sharing processed data with other investigators.
- generating combined and harmonized data sets that can be shared between investigators.
- providing genetic and other patient-level data on a common-access cloud site where researchers can perform large-scale computational tasks without the need to download and store large data sets.
- providing access to sponsor-level data from clinical trials to revisit those that failed to demonstrate efficacy.
- supporting electronic consenting and other consenting models that give ownership of health care data to patients and study participants.
- Research Implementation Area
- Public Private Partnerships
- In Progress
Research Programs and Resources
- NIH Alzheimer’s Disease Research Summit 2015: Path to Treatment and Prevention
- NIH Alzheimer’s Disease Research Summit 2018: Path to Treatment and Prevention