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Rare Disease Day at NIH
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Meeting/ Workshop
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FDA
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NCATS, NHLBI, NCI, CC, NIAAA, NINDS
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Rare Disease Day; takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients; lives. Each year, the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. The goals of Rare Disease Day at NIH are to: demonstrate the NIH commitment to helping people with rare diseases through research; highlight NIH-supported rare diseases research and the development of diagnostics and treatments; initiate a mutually beneficial dialogue among the rare disease community; exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts; shine a spotlight on stories told by people living with a rare disease, their families, and their communities.
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Rare Diseases Registry Program (RaDaR)
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Research Initiative
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FDA
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NCATS
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NCATS launched the Rare Diseases Registry Program (RaDaR) website to provide the rare diseases community with easily accessible guidance on how to set up and maintain high-quality registries that are based on best practices and data standards. The goal is to enable rare diseases patient organizations to better promote and support patient-focused research and the collection of patient data that can be used in developing treatments for rare diseases.
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Reciprocal Educational and Training Partnerships between FDA/CDER and the NIH Clinical Center
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Training Initiative
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FDA
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CC, NCI, NIAID, NIDCR, NIDDK, NIMH, NINDS
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This activity is sponsored by the Clinical Pharmacology Program, Office of Clinical Research Training and Medical Education (OCRTME) at The National Institutes of Health (NIH) Clinical Center (CC). It consists of elective rotations at the Office of Clinical Pharmacology (OCP) and the Office of New Drugs (OND) of the US Food and Drug Administration's (FDA) Center for Drug Evaluation and Research. It is for NIH staff, with a primary focus on clinical fellows and research fellows, who expressed an interest in learning more about FDA regulatory sciences applicable to drug development research. Rotating fellows are mentored by FDA staff on the required elements of an Investigational New Drug (IND) application and the key elements of the FDA review process from a regulatory perspective. This program also established a mechanism for FDA scientific reviewers at the OCP to rotate at the NIH CC and to interact with members of a clinical research team, thus acquiring a better perspective on clinical research protocol implementation and the requirements of an Institutional Review Board (IRB) at the NIH.
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Recognize, Assist, Include, Support and Engage (RAISE) Family Caregiving Advisory Council
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Committee, Work group, Advisory group, or Task Force
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ACF, ACL, CDC, CMS, FDA, HRSA, IHS, SAMHSA
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NIA
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Federal and non-federal advisory council is charged with providing recommendations to the Secretary of Health and Human Services on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs, as mandated by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.
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Reentry Research Network
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Committee, Work group, Advisory group, or Task Force
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ACF, SAMHSA
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NIDA, OD/DPCPSI/OBSSR
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This is a subgroup that reports to the Federal Interagency Reentry Council. The purpose of this group is to bring together numerous federal agencies to make communities safer, assist those returning from prison and jail to becoming productive, tax-paying citizens, and save taxpayer dollars by lowering the direct and collateral costs of incarceration. The National Institute on Drug Abuse (NIDA) serves on the HHS Re-entry/CJ working group. Staff meets by phone monthly.
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Regenerative Medicine Innovation Project Senior Oversight Committee
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Committee, Work group, Advisory group, or Task Force
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FDA
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NIAID, NCATS, NEI, NHLBI, NIA, NIAMS, NIDCD, NIDCR, NIDDK, NINDS
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The Regenerative Medicine Innovation Project was established by the 21st Century Cures Act to accelerate progress in the field by supporting clinical research on adult stem cells, while promoting scientific rigor and protecting patient safety. This initiative is a trans-NIH effort, in coordination with the Food and Drug Administration (FDA).
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Regenerative Medicine Project
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Research Initiative
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FDA
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NIA
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The Regenerative Medicine Innovation Project (RMIP) was established by the 21st Century Cures Act to accelerate progress in the field by supporting clinical research on adult stem cells, while promoting scientific rigor and protecting patient safety. This initiative is a trans-NIH effort, in coordination with the Food and Drug Administration (FDA).
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Registry-based studies of hematologic malignancy incidence and survivorship
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Research Initiative
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FDA
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NCI
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NCI and FDA investigators are collaborating to utilize registry-based data to describe incidence trends of hematologic malignancies as well as second cancer risk and mortality patterns among hematologic malignancy survivors.
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Regulation of Virulence Genes in Bordetella pertussis
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Research Initiative
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FDA
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OD/OIR, NIDDK
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Regulation of Virulence Genes in Bordetella pertussis
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RePORT South Africa
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Research Initiative
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CDC, OS
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NIAID
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RePORT South Africa is a jointly funded project between the National Institutes of Health (NIH), the US President's Emergency Plan for AIDS Relief (PEPFAR), and the South African Medical Research Council and Department of Science and Technology to establish a consortium of Tuberculosis (TB) researchers in South Africa.
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