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NIH Feedback Needed: What are the “Research Challenges of Inclusion Across the Lifespan”?

Posted: 1/4/2020 (Demography News)

NIH is seeking guidance from the research community about the challenges of inclusion when studying people in any context and across the lifespan. NIH focuses on clinical research and by that they also mean behavioral and social science research that involves collecting any type of information or materials from individuals. They seek advice on understanding a whole host of barriers and challenges related to inclusion across age, underrepresented populations, and vulnerable populations. Your feedback will inform NIH’s Inclusion Across the Lifespan II Workshop planned for 2020. Click here to provide your feedback.

Some of the questions they seek answers to include:

  • What are the challenges and barriers to enrollment of individuals of all ages in clinical research studies?
  • What are the challenges and barriers to collection and reporting of participant-level data, including age at enrollment?
  • How can studies implement strategies that address potential ethical challenges when including individuals under 18 years of age, frail or cognitively impaired older adults, and other vulnerable populations in clinical trials or clinical studies?
  • What kinds of strategies and special considerations for inclusion might be presented and discussed with regards to inclusion of other underrepresented populations, e.g. sex/gender minorities, racial/ethnic minorities, people with disabilities, rural/isolated populations, language minority individuals, pregnant and lactating women, people with comorbidities, and others who are not well represented in clinical research?How can the workshop and NIH prepare for the development, implementation, and dissemination of scientifically appropriate and ethical inclusion and exclusion criteria for clinical trials or clinical studies?
  • What is the effect of developmental/aging stages on responses to biomedical and behavioral interventions, and strategies to tailor study planning and implementation to life stages.
  • How can studies overcome barriers to inclusion in clinical studies related to comorbidities, impairments, and disabilities?
  • What are the practice- or evidence-based strategies and necessary adaptations in recruitment/retention methods and modified safety monitoring? 
  • How best to use life stage-specific and patient-oriented outcomes in clinical trials or clinical studies?
  • What are the opportunities for education and outreach to clinical researchers, community physicians, and their patients about the importance of participation in research?
  • What are good strategies to disseminate and support the adoption of proven implementation techniques and strategies that overcome barriers and maximize the inclusion of a broad range of ages, sexes/genders, races/ethnicities, and other underrepresented participants in clinical trials or clinical studies?

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Deadline: 02/15/2020