A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation.

Only 22 manuscripts were included, and only two focused specifically on gatekeeping, so the evidence base is narrow. Most included studies had small samples or looked at only a subgroup of adults with intellectual or developmental disabilities, so findings may not apply broadly. The review extracted only a few sentences or paragraphs from each manuscript, sometimes without enough context to interpret them. The included literature was mostly retrospective reports, commentaries, surveys, focus groups, interviews, and reviews, not tested interventions. Searches were limited to peer-reviewed English articles from 1 January 2009 to 2 June 2022, so older or non-English studies may be missed. The dataset was largely silent on guardianship, which can affect who may consent or participate. Many manuscripts did not describe who acted as the gatekeeper or how that person's relationship to the participant affected actions.

The authors declared no conflicts of interest. The work was funded by the Patient Centered Outcomes Research Trust Fund.

Do not read these gate-opening actions as proven ways to increase research participation. The review maps descriptive reports and small studies, and only two manuscripts focused specifically on gatekeeping.