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Guidance to Encourage the Use of CDEs

NIH Institutes and Centers (ICs) use a range of approaches to encourage use of CDEs by funded investigators. Such encouragement may be included in policy documents, NIH Guide Notices, and/or Funding Opportunity Announcements (Requests for Application and Program Announcements). This list below provides a summary of such directives, including a list of active Funding Opportunity Announcements. It will be updated on a periodic basis to reflect new announcements.

Policy Statements

  • NCATS Global Rare Diseases Patient Registry Data Repository (GRDRSM) Program Policy Guidance
  • Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR) Data Sharing Policy (27 March 2014)

NIH Guide Notices

  • NIDA - Substance Abuse and Addiction (NOT-DA-12-008)
  • NIMH – Data Sharing Expectations for NIMH-funded Clinical Trials (NOT-MH-14-015)
  • NIMH - Notice Announcing Data Harmonization for NIMH Human Subjects Research via the PhenX Toolkit (NOT-MH-15-009)
  • NIMH - National Database for Autism Research (NOT-MH-09-005)
  • NINDS - Notice of Intent to Publish a Funding Opportunity Announcement for Detect, Define and Measure the Progression of Chronic Traumatic Encephalopathy (NOT-NS-14-031)

Requests for Applications and Program Announcements

IC/ProjectTitleFOA NumberNIH CDEs Specified
BD2K Early Stage Development of Technologies in Biomedical Computing, Informatics, and Big Data Science PA-14-155 Select from Portal
BD2K Extended Development, Hardening and Dissemination of Technologies in Biomedical Computing, Informatics and Big Data Science PA-14-156 Select from Portal
NCATS Rare Diseases Clinical Research Consortia (RDCRC) for Rare Diseases Clinical Research Network RFA-TR-13-002 Neuro-QoL, PROMIS
NCI Molecular and Cellular Characterization of Screen-Detected Lesions RFA-CA-14-010 Select from Portal
NCI Small Grants for Behavioral Research in Cancer Control PAR-12-035 PhenX, PROMIS
NHGRI Human Heredity and Health in Africa (H3Africa): Collaborative RFA-RM-12-006 PhenX
NHGRI Human Heredity and Health in Africa (H3Africa): H3Africa Research Grants RFA-RM-12-007 PhenX
NHGRI Genome-wide Association Studies of Treatment Response in Randomized Clinical Trials - Coordinating Center RFA-HG-08-005 PhenX
NHGRI Genome-wide Association Studies of Treatment Response in Randomized Clinical Trials-Study Investigators RFA-HG-08-004 PhenX
NHGRI The Electronic Medical Records and Genomics (eMERGE) Network, Phase II Coordinating Center RFA-HG-10-010 PhenX
NIA Enhancing Cross-National Research within the Health and Retirement Study Family of Studies RFA-AG-15-015 NIH Toolbox, PhenX, PROMIS
NIAAA Epidemiology and Prevention in Alcohol Research PA-14-190 PhenX
NIAMS Ancillary Domain Validation Patient-Reported Outcomes Measurement Information System (PROMIS) Studies (R01) RFA-AR-12-007 PROMIS
NIDA Long-Term Retention in Care for U.S. Substance Using Populations PA-14-224 PhenX
NIDA Effects of Cannabis Use and Cannabinoids on the Developing Brain PA-14-164 PhenX
NIDA Substance Use and Abuse, Risky Decision Making and HIV/AIDS PA-14-061 PhenX
NIGMS Biomedical Technology Research Resource PAR-14-021 Select from Portal
NIMH Pilot Effectiveness Studies and Services Research Grants RFA-MH-15-330 Select from Portal
NIMH Longitudinal Assessment of Post-traumatic Syndromes RFA-MH-15-110 Select from Portal
NIMH Exploratory Clinical Trials of Novel Interventions for Mental Disorders RFA-MH-15-300 Select from Portal
NIMH First in Human and Early Stage Clinical Trials of Novel Investigational Drugs or Devices for Psychiatric Disorders PAR-14-107 Select from Portal
NIMH Clinical Trials to Test the Effectiveness of Treatment, Preventive, and Services Interventions RFA-MH-15-320 Select from Portal
NIMH Confirmatory Efficacy Clinical Trials of Non-Pharmacological Interventions for Mental Disorders RFA-MH-15-340 Select from Portal
NINDS Brain Somatic Mosaicism and its Role in Psychiatric Disorders PAR-14-173 Select from Portal
NINDS Morris K. Udall Centers of Excellence for Parkinson’s Research RFA-NS-12-009 NINDS CDEs
NINDS Phase III Investigator-Initiated Efficacy Clinical Trials PAR-13-278 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINDS Studies in Parkinson’s Disease Biomarkers Discovery RFA-NS-12-011 NINDS CDEs
NINDS NIH StrokeNet Clinical Trials and Biomarker Studies for Stroke Treatment, Recovery, and Prevention Infrastructure and Resource Access PAR-14-253 NINDS CDEs
NINDS NINDS Exploratory Clinical Trials PAR-13-281 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINDS NeuroNEXT Infrastructure Resource Access PAR-11-344 NINDS CDEs
NINDS NeuroNEXT Clinical Trials PAR-13-343 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINDS Detect, Define and Measure the Progression of Chronic Traumatic Encephalopathy RFA-NS-14-012 NINDS CDEs
NINDS NINDS Renewal Awards of SBIR Phase II Grants (Phase IIB) for Exploratory Clinical Trials and Clinical Research PAR-14-208 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINDS NINDS Renewal Awards of SBIR Phase II Grants (Phase IIB) for Pre-Clinical Research PAR-14-209 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINDS CREATE Devices: Translational and Clinical Studies on the Path to 510 (k) PAR-14-295 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS
NINR Centers of Excellence in Self-Management Research RFA-NR-14-002 Select from Portal
NINR Personalized Genomics for Symptom Management: Bridging the Gaps from Genomic Discovery to Improved Health Outcomes RFA-NR-11-003 PhenX
Multiple ICs Connectomes Related to Human Disease PAR-14-281 Select from Portal
NHGRI/NIMH Centers of Excellence in Genomic Science PAR-14-195 PhenX
NIAAA/NIDA/NCI Accelerating the Pace of Drug Abuse Research Using Existing Data PAR-13-080 PhenX
NICHD/NIMH Outcome Measures for Use in Treatment Trials for Individuals with Intellectual and Developmental Disabilities PAR-13-213 NINDS CDEs, Neuro-QoL, NIH Toolbox, PROMIS