Resources for Researchers and Clinicians

A variety of government agencies and other organizations offer information, resources, and services for rare disease researchers and clinicians. Click on the accordions below to find a variety of these resources. See also our pages offering resources for early stage investigators and funding opportunities.

So Many Procedures, So Little Time - How to Develop an Effective Schedule of Events for a Research Protocol.

Regulatory Webinar Series: Presented by Mike Fusakio, PhD; Nathan Hawk, BSPS; Samantha Sonoda, MS, CCRA; and Lisa M. Tully, MA, CCRP, all affiliated with Cincinnati Children's Hospital Medical Center.

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Single IRB (Institutional Review Board) Presentation & Panel Discussion

Regulatory Webinar Series: Features Nichelle Cobb, PhD, Smart IRB Director at University of Wisconsin-Madison. Panelists include James Cnota MD (Cincinnati Children's), Jeremy Corsmo, MPH (Cincinnati Children's), Pooja Khatri, MD, MSC (University of Cincinnati) and Mike Linke, PhD (University of Cincinnati). 

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Human Subject Research Protocols: If you write it (well), they will come

Regulatory Webinar Series: Presented by Mike Fusakio PhD, Cincinnati Children's Hospital Medical Center. 

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COVID-19: Information for NIH Applicants and Recipients of NIH Funding

A centralized information page that includes links to a variety of guidance, information, resources, FAQs and NIH funding opportunities relating to COVID-19, from the NIH Central Resource for Grants and Funding Information. 

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Frequently Asked Questions (FAQs)

An array of Frequently Asked Questions (and answers) in response to inquiries on policies and programs affecting the grants process, updated 7/2/2020.

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NCATS: A Translational Approach to Addressing COVID-19

Offers an overview of research activities that the NIH's National Center for Advancing Translational Sciences is supporting, spanning the translational science spectrum to address the novel coronavirus 2019 (SARS-CoV-2) and the disease it causes (COVID-19). 

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Race, ethnicity and racism in the nutrition literature: an update for 2020.

Reviews the limitations of classifying research participants by race and recommends a series of steps for authors, researchers and policymakers to consider.

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Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry

U.S. Food and Drug Administration guidance which recommends approaches that sponsors of clinical trials intended to support a new drug application or a biologics license application can take to increase enrollment of underrepresented populations in their clinical trials.

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Diversity, Equity & Inclusion Webinar: The Redlining of Healthcare

How have housing, education and economic policies influenced social determinants of health? This webinar features Tonya Winders, MBA, of the Allergy & Asthma Network and explores explores how we can move forward to reduce systemic barriers to ensure better health outcomes.

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NIH Data Management and Sharing policy

New NIH Policy for Data Management and Sharing that goes into effect January 25, 2023 and replaces the existing 2003 NIH Data Sharing Policy. Updated to keep pace with scientific and technological advancements and emphasizes the NIH’s commitment to data management and sharing.

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Screenshot of presentation during the Regulatory Fitness in Rare Disease Clinical Trials Workshop

FDA CDER & NIH NCATS Regulatory Fitness in Rare Disease Clinical Trials Workshop

On May 16 and 17, 2022, the FDA’s Center for Drug Evaluation and Research (CDER) and NIH’s National Center for Advancing Translational Sciences (NCATS) hosted a jointly sponsored virtual workshop on regulatory fitness in rare disease clinical trials.

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