| National Amyotrophic Lateral Sclerosis Registry |
Committee, Work group, Advisory group, or Task Force |
ATSDR, CDC |
NINDS |
The National ALS Registry is a congressionally mandated registry for persons in the US with ALS. It is the only population-based registry in the US that collects information to help scientists learn more about who gets ALS and its causes. https://www.cdc.gov/als/Default.html |
| National Biodefense Strategy (NBS) Therapeutics Joint Capabilities Plan Writing Group |
Committee, Work group, Advisory group, or Task Force |
ASPR, CDC, FDA |
NIAID |
The Joint Capabilities Plans outline how the USG will achieve the specific outcomes related to the topic areas included in the 2022 National Biodefense Strategy and Implementation Plan, which provides a framework that organizes how the USG manages its activities to more effectively assess, prevent, prepare for, respond to, and recover from biological threats. The JCPs will be finalized by the Writing Group in 2023 with semi-annual reporting requirements until 2027. |
| National Bioeconomy Board |
Committee, Work group, Advisory group, or Task Force |
ASPR |
OD/OSP |
NBB leads implementation of the government-wide bioeconomy efforts; serves as the governance body for the National Biotechnology and Biomanufacturing Initiative (NBBI); and serves as a forum to discuss, but not develop, federal policies relating to the bioeconomy at large. |
| National Clinical Cohort Collaborative (N3C) |
Resource Development |
ARPA-H, ASPE, ASPR, CDC, CMS, FDA |
NCATS, NCI, NIDDK, NIGMS |
The N3C is an NCATS-led initiative, in collaboration with NCI, NIDDK, ASPE, the NCATS-supported Clinical and Translational Science Awards (CTSA) Program hubs, and NIGMS-supported Institutional Development Award Networks for Clinical and Translational Research (IDeA-CTR). It leverages a secure, scalable data repository which houses multiple virtual domain-specific research tenants, covering the education, COVID, cancer, and renal domains. With over 23 million patients represented, N3C demonstrates that large-scale, harmonized clinical data sharing across diverse modalities is achievable, enabling high-impact translational research and precision medicine studies. Core objectives include: maintaining a secure and privacy-preserving infrastructure for clinical research; receiving longitudinal electronic health record (EHR) data from participating healthcare organizations; linking data from multiple sources such as claims and disease-specific registries; providing operational and analytic support to researchers working within the N3C platform; and ensuring rigorous adherence to governance frameworks and data agreements to protect patient privacy and integrity while facilitating groundbreaking clinical discoveries. |
| National Coalition for Oversight of Assisted Reproductive Technologies |
Committee, Work group, Advisory group, or Task Force |
CDC, FDA |
NICHD |
The National Coalition for Oversight of Assisted Reproductive Technologies (NCOART) has become a successful forum for discussion of issues by organizations involved in the assisted reproductive technologies (ART) in the United States. |
| National Collaborative on Childhood Obesity Research (NCCOR) |
Research Initiative |
CDC |
FIC, NCI, NHLBI, NIAMS, NICHD, NIDDK, NIEHS, NIMHD, NINR, OD/DPCPSI/OBSSR, OD/DPCPSI/ODP, OD/DPCPSI/ODS, OD/DPCPSI/ONR, OD/ECHO |
NCCOR is a collaborative public private partnership between RWJF, USDA, CDC and NIH. This consortium aims to explore the contribution of genetics to variation in intentional weight loss and weight maintenance. The steering committee includes representatives from all 4 organizations, including David Berrigan of DCCPS/NCI and Andrew Bremer from NICHD. Drs. Berrigan and Bremer consult with IC leads from other member ICs on priorities and goals. Staff from all member ICs participate in meetings, projects, workgroups, and discussions. In addition to serving on the steering committee, Dr. Berrigan led the most recent contract competition for the NCCOR Coordinating center and serves as the COR. Many NCI staff play important roles in NCCOR activities. NCI is playing a leading role, but NCI co-leads this initiative, along with NICHD and representatives from other member ICs. No one IC is considered the "leader." Notable products include a suite of Measurement and data related tools (https://www.nccor.org/nccor-tools/mrresourcesuite/), the Youth Compendium of Physical Activities (https://www.nccor.org/nccor-tools/youthcompendium/), and an extensive library of webinars (https://www.nccor.org/webinars/). In 2024, NCCOR has held a variety of workshops, published peer reviewed articles, updated the catalog of surveillance systems, and generated new tools and guides. Most notably, NCCOR hosted two workshops addressing obesity at multiple levels (OPUS 1 and 2). Details are available at the website. |
| National Database for Antibiotic Resistant Organisms (NDARO) |
Resource Development |
CDC, FDA |
FIC, NCATS, NCI, NHLBI, NIA, NIAAA, NIAID |
The objective of this collaboration is to produce a collection of high-quality genome sequences from antibiotic-resistant strains and to create and maintain a publicly accessible database -- National Database for antibiotic resistance (AR), developed and housed at the National Center for Biotechnology Information of the National Library of Medicine (NLM). |
| National Death Index Linkage Access for NIH-Supported Investigators |
Resource Development |
CDC |
OD/DPCPSI/OBSSR, OD/IMOD |
As an agreement between the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) National Center for Health Statistics, (NCHS), NIH will reimburse the NCHS National Death Index (NDI) for the costs of NIH-supported investigators to link their research databases with the NDI for the research aims supported by the NIH. |
| National Death Index Working Group |
Committee, Work group, Advisory group, or Task Force |
CDC |
CC, NCI, NHLBI, NIA, NIAID, NIDA, OD/DPCPSI/OBSSR |
The National Death Index (NDI) is a centralized database of death record information on file in state vital statistics offices. Working with these state offices, the National Center for Health Statistics (NCHS) established the NDI as a resource to aid epidemiologists and other health and medical investigators with their mortality ascertainment activities. The National Death Index Working Group brings together federal and non-federal demographic experts to improve the quality, comprehensiveness, and utility of the National Death Index. |
| National Ending the HIV Epidemic (EHE) Meeting |
Meeting/ Workshop |
CDC, HRSA, OASH |
NIAID, NIMH, OD/DPCPSI/OAR |
On September 15, 2022, 350 researchers, government leaders, public health partners, and community members from throughout the U.S. participated in the hybrid "2nd National Meeting for Research and Community Collaboration towards Ending the HIV Epidemic (EHE) in the U.S. Meeting" hosted by the NIH and the UAB CFAR. The meeting featured presentations by academic investigators and their implementation and community partners funded through NIH EHE awards and promoted the sharing of best practices and generalizable findings. |