Public Private Partnerships: Data sharing (Milestone 14.E)
Achieved
Timeline Start - End
2016 - 2020Research Implementation Area
Public Private PartnershipsDevelop a partnership among key stakeholders to implement the sharing of all data and biosamples from preclinical and clinical studies to enable the adoption of formal failure analysis across the drug development continuum. The partnership should provide resources for data hosting and curation.
Success Criteria
Convene a meeting that brings together experts from industry and academia, regulatory and funding agencies, bioethics experts, patients and patient advocates to establish the framework for a multi-stakeholder partnership aimed at enabling the sharing of all data and biosamples from preclinical and clinical studies.
Summary of Key Accomplishments
The NIH AD Research Summits in 2015 and 2018 convened over 150 leading experts working on AD and other complex diseases coming from academia, the biotech and pharmaceutical industries, and public advocates; the participants put forward recommendations that serve as a framework to eliminate barriers for sharing data and research tools and enable open science practices in basic, translational, and clinical research.
The key accomplishments summary is current as of March 2022.
Accomplishments/Implementation Activities
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
- Accelerating Medicines Partnership Alzheimer’s Disease (AMP AD) Biomarkers Project
- Alzheimer’s Prevention Initiative (API) – based on listed projects
- Anti-Amyloid Treatment In Asymptomatic Alzheimer’s Disease Study (A4 study)
- Dominantly Inherited Alzheimer's Network Trials Unit - Adaptive Prevention Trial (DIAN-TU)
- Alzheimer Biomarker Consortium – DS
- Collaboration for Alzheimer’s Prevention (CAP): Prevention Trials