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Factors Associated with Pre-Research Recruitment in Autism and Related Developmental Disorders

Ashwin Karnik1, Gurjot Malhi1,2, Theodore Ho3

  • 1Department of Psychiatry and Behavioral Sciences, University of Washington, 1959 NE Pacific St, Seattle, WA, 98195, USA.

Journal of Autism and Developmental Disorders
|November 16, 2023
PubMed

Insights

Disparities in autism research participation exist at the pre-recruitment stage. A research registry favored English speakers, White race, and Non-Hispanic ethnicity, indicating a need for equitable outreach to diverse autism communities.

Area of Science:

  • Autism Spectrum Disorder Research
  • Health Disparities
  • Clinical Trial Recruitment

Background:

  • Access to research programs is crucial for improving health outcomes in diverse populations.
  • A pre-recruitment database, the Research Registry, was established at an urban tertiary Autism Center to facilitate research enrollment.
  • Understanding disparities in the initial stages of research recruitment is essential for equitable participation.

Purpose of the Study:

  • To examine potential disparities in the pre-research recruitment stage within an Autism Center.
  • To compare demographic factors of patients not enrolled in the Research Registry versus those enrolled.
  • To investigate demographic differences between Registry participants recruited via informed consent form (ICF) versus research interest form (RIF).

Main Methods:

  • Comparative analysis of demographic factors between Autism Center patients and Research Registry enrollees.
  • Examination of demographic differences within the Registry based on recruitment method (ICF vs. RIF).
  • Statistical comparison of patient characteristics including language, race, ethnicity, insurance, income, and distance from the center.

Main Results:

  • A total of 18,522 patients were included; 1092 were in the Registry.
  • Registry enrollment was associated with English as primary language, White race, Non-Hispanic ethnicity, and younger age at first clinic visit.
  • The RIF group within the Registry showed higher proportions of non-English primary language, Medicaid insurance, longer distance, and lower income compared to the ICF group.

Conclusions:

  • Pre-research recruitment stages may exhibit disparities, potentially limiting diverse participation in autism research.
  • Equitable dissemination of research opportunities is necessary to achieve advancements in autism and related developmental disorders.
  • Further efforts are required to ensure diverse populations are reached and can participate in research.
Abstract

Keywords:
AutismDisparitiesEquityRecruitmentResearch

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