NIH Seeking Feedback on Consent Language Resource to Foster Participant Specimen and Data Sharing

July 2, 2021

NIH is committed to ensuring that study participants are equal partners in research and have input into how their data and biospecimens are collected and used in the future. At the heart of any research effort lies the need for transparent and clear conversations between researchers and prospective participants about mutual goals and expectations regarding sharing practices.

To assist in facilitating this dialogue, NIH has been working with stakeholders to identify informed consent language “best practices” capable of effectively describing how data and biospecimens will be stored and shared for future research. From these conversations, NIH has developed a new resource that we are seeking the community’s feedback on. The resource describes points to consider when addressing this issue, and provides sample consent language that researchers can tailor based on their own unique study needs…read on for more…

Help Us Understand How You Use Common Data Elements in NIH-Supported Research

February 8, 2021

Common Data Elements foster rigor, facilitate data sharing, and allow multiple datasets to be integrated. They also help make data more FAIR (Findable, Accessible, Interoperable, and Reusable). Many different CDEs are currently in use and can vary across research disciplines, so we would encourage researchers check out databases like the NIH CDE Repository for examples, tools, and other related resources. Through a recently released Request for Information (NOT-LM-21-005), we seek your thoughts on how you use CDEs, potential challenges to their adoption, and how NIH might facilitate and incentivize their use to help us plan future CDE-related efforts.

Seeking Your Ideas on the NIH-Wide Strategic Plan for COVID-19 Research

October 29, 2020

From shifting public health needs to the unprecedented pace of biomedical discovery, everything about the coronavirus response is evolving. This goes for the NIH-Wide Strategic Plan for COVID-19 Research as well, so too must it evolve.

We want your help on the next iteration of the Plan. A Request For Information released yesterday seeks public feedback on the current Plan (NOT-OD-21-018). You or your organization can submit ideas here by December 7, 2020.

Share Your Ideas to Foster Research Integrity and the Responsible Conduct of Research

October 22, 2020

We all have a vested interest in maintaining the integrity of biomedical research. It is critically important to do so, after all, so the public can trust the resulting scientific findings. These posts from 2020, 2019, and 2018 highlight a few ways NIH works toward this goal of an environment promoting integrity and discouraging misconduct (check out this NIH All About Grants podcast for more on this).

Now it’s your turn to share some ideas. Our colleagues with the HHS Office of Research Integrity (ORI) recently published a Request for Information seeking your input. The feedback they receive will be invaluable for conducting future outreach and developing educational resources for the research community.

Help Us Strengthen Rigor of Animal Research: Public Feedback Requested

June 23, 2020

Ever figured out a clever solution to a vexing challenge that affected the rigor of your work with laboratory animals, and then thought that those solutions could improve the quality and transparency of animal research supported across NIH? Recently found yourself at virtual lab meetings brainstorming ways to facilitate translating the findings from your animal study to human biology and disease? Questioned the status quo on how the research culture drives the choice of animal models and the design of experiments? Well, we want to know more.

Seeking Thoughts on the Framework for the Next NIH-Wide Strategic Plan

February 18, 2020

Last week, we opened up the opportunity for the public to comment on the framework for the next NIH-Wide Strategic Plan (NOT-OD-20-064). This plan, for fiscal years (FYs) 2021-2025, will serve as an update to, and build off the progress made on, the current FYs 2016-2020 plan. The NIH-Wide Strategic Plan expresses a vision for … Continue reading “Seeking Thoughts on the Framework for the Next NIH-Wide Strategic Plan”

Seeking Comments on Using Fast Healthcare Interoperability Resources for NIH-Supported Research

September 30, 2019

NIH is currently accepting public comments on the use of standards for capturing, integrating, and exchanging clinical data for research purposes (NOT-OD-19-150). This is a great opportunity to hear more from the community on ways to strengthen approaches that find, share, and access high-quality patient data, while also making it more interoperable and reusable. Such goals align with long-standing NIH data sharing policies and what was also called for in a related NIH strategic plan on data science.

Comments Welcomed on the Draft Report Recommending How to Reduce Administrative Burden in Research with Laboratory Animals: A Next Step in Implementing the 21st Century Cures Act

December 7, 2018

The 21st Century Cures Act requires federal agencies to “review applicable regulations and policies for the care and use of laboratory animals and make revisions, as appropriate, to reduce administrative burden on investigators while maintaining the integrity and credibility of research finding and protection of research animals.” This past March we requested feedback from the public on ways to reduce regulatory burden while also maintaining the highest standards for protecting animal welfare and scientific integrity. You responded with constructive and helpful feedback with more than19,000 comments. Generally, many responses supported the actions initially proposed in the request, but they were balanced with concerns from animal advocacy and other groups.

A Data Sharing Renaissance: Music to My Ears!

October 11, 2018

When world famous cellist, Yo-Yo Ma, visited the NIH campus, he shared a story from the history of music, in which the peak of stringed instrument quality occurred in the late 17th century at a time of great collaboration and sharing of knowledge. When instrument makers began to compete, all of that changed: secrets of craftsmanship were held close and the quality of instruments plummeted. This decline lasted, according to Ma, until the 20th century, when again the free-flow of knowledge resumed. NIH Director Francis Collins noted, “There’s a lesson here about science.”