NIH Request For Information – Seeks Opinions On Child Enrollment in the All of Us Research Program

You have until Sept 22 to respond to the RFI  to Inform Plans for Child Enrollment in the All of Us Research Program.  Responses should be submitted to this web form.

The All of Us Research Program is an historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. The enrollment of children in the cohort has consistently been an important goal of the program: the Advisory Committee to the NIH Director (ACD) Precision Medicine Initiative Working Group, which developed the final report that informs the All of Us Research Program, strongly supported the inclusion of children in the cohort, recommending that the NIH work thoughtfully and carefully to “develop specific approaches to address the needs of [children] so that they may be included and retained in the cohort.”  The efforts of the Child Enrollment Scientific Vision Working Group (CESVWG), and this RFI, are key to the program’s efforts to develop a thoughtful and appropriate plan for the addition of children to the program.

The CESVWG seeks public input on the pediatric research that the All of Us Research Program may be uniquely positioned to enable through the enrollment of children. Responses should include:

  • What are the most significant short- (0–5 years), medium- (5–10 years), and long-term (more than 10 years) precision medicine research questions that could be addressed by the inclusion of pediatric populations in the All of Us Research Program?
  • What are the key gaps in current pediatric study designs that might be appropriate for All of Us to address through the enrollment of children (for example, preconception studies, sibling studies, etc.)?
  • What are the research resources that the inclusion of children into the All of Us Research Program could potentially generate (for example, innovative algorithms, methodologies, etc.)?
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