Help us enhance diversity in Alzheimer’s and related dementias clinical trials
Health Policy Analyst,
Division of Extramural Activities (DEA).
In 2018, NIA launched the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research with the goal of engaging a wider, more diverse number of participants in these studies. We have since been working on several ways to address the challenges outlined in the recruitment strategy. One of our newest projects is designed to examine the potential of community-based research networks (CBRNs) to enhance inclusion of traditionally underrepresented populations. To make this project a success, we need your help!
On March 9, we released a Request for Information (RFI) asking for comments and suggestions as we consider the potential of CBRNs to help with these efforts. We are specifically seeking insights that will enable us to sustain engagement with underrepresented adults, including people with disabilities, people from rural communities, and people of diverse races and ethnicities.
The benefits of community-based research networks
While there is no set definition of a community-based research network, for this RFI, we are broadly defining a CBRN as a multisite network of health care providers and practitioners that extends beyond the confines of large academic medical centers, and whose members can participate in the support and/or conduct of Alzheimer’s and related dementias clinical trials. Some examples we are using to develop an understanding of current models include:
- AHRQ-defined Practice-Based Research Networks
- Global Alzheimer’s Platform Foundation primary care practices
- National Patient-Centered Clinical Research Network
- Networks of assisted living facilities
- NIH National Cancer Institute’s Community Oncology Research Program
- NIH National Center for Advancing Translational Sciences Clinical and Translational Science Awards Program with extensive community-based representation beyond large medical settings
Community-based research networks and stakeholder participation in clinical trials can have multiple benefits. These include increasing and training the number of clinicians who participate in research activities, expanding access to the number of potential participants in Alzheimer’s and related dementias clinical trials, and leveraging the unique perspectives of community-based clinicians.
We need your feedback
Here’s where your knowledge about these types of networks can help. We need your feedback to the RFI, which includes seven open-ended statements related to CBRNs. We hope to receive perspectives from a wide range of respondents who are interested in this work, including professional organizations, community-based advocates, community research networks, clinical researchers, academic institutions, patient advocacy groups, and those living with or affected by Alzheimer’s and related dementias.
The RFI will be open until April 9, 2022, so please share your insights and expertise through the RFI submission website to help shape NIA efforts in this important area! If you have questions, please contact us at NIARFICBRN@nih.gov.
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