Adults with NDDs as Research Participants: A Cross-Sectional Survey of Researcher Knowledge, Attitudes, and Perceptions

Abstract

Abstract Background: The focus on NDDs as a pediatric concern leaves a gap in evidence-based care for their aging-related health needs in adulthood. This gap is compounded because their health outcomes are worse than for people with disabilities (PWDs) overall. The causal chain for the near-universal absence of persons with NDDs from research originates with researchers. We present initial findings from our Disability as Difference: Reducing Researcher Roadblocks study, which surveyed research teams' knowledge, attitudes (implicit and explicit), and perceptions about NDDs and research engagement, assessed the psychometrics of novel measures, and piloted an exploratory implicit association test (IAT). Methods: A convenience sample (n=118) of researchers who primarily studied non-disabled adults completed online measures of: Knowledge-10 novel multiple-choice items on NDD definitions, prevalence, etiquette, etc.; Attitudes (explicit & implicit) - a validated (2006) explicit measure toward PWDs, and a novel keystroke-based implicit association tool pairing 5 NDD stimuli terms with positive/negative attributes; and Perceptions- novel 5-point Likert items spanning Awareness, Desire, Knowledge, Ability, and Reinforcement, per Prosci's ADKAR â model of change. We report descriptive statistics, Cronbach alphas to assess subscale reliability, and bivariate correlations between total and subscale scores. Results: Factual knowledge was relatively high (73.7% correct). ADKAR subscale alphas ranged from .71 to .90, supporting their reliability. Just under a third of researchers reported high/very high knowledge and ability on the pragmatics of engaging people with NDDs (adapting consents, modifying protocols, minimizing risk, justifying study exclusions), underscoring knowledge and ability as key barriers. Conversely, structural reinforcements were viewed as stronger facilitators: a majority of researchers reported high/very high impact for funder mandates (70%), IRB expectations (53%) and journal policies (52%). The pilot NDD IAT revealed no preference for people with vs. without NDDs (mean 6.16 vs. 3.77), in contrast to strong pro-abled preference on an established physical-disability IAT. General disability attitude data were uninterpretable. Conclusions: Findings indicate need for practical tools and guidance for researchers and IRB staff, paired with structural mandates from funders, IRBs, and journals. Meaningful change will require multiple strategies (e.g., education, practical guidance, policy) across individual, institutional, and regulatory levels, guided by implementation science and change management principles. Terminology- The majority of developmental disabilities (DDs) are neurodevelopmental in origin, reflecting disruptions in early brain development that persist across the lifespan. 1 We use the term NDD, unless DDs are specifically referred to.