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

Purpose: Access to research programs and increased diversity in research enrollment may be key to improving diverse populations' health and healthcare outcomes. To facilitate research recruitment, a Research Registry ("Registry"), a pre-recruitment database, was developed at an urban tertiary Autism...

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Publicado en:Journal of Autism & Developmental Disorders Vol. 55; no. 6; pp. 1976 - 1982
Autores principales: Karnik, Ashwin, Malhi, Gurjot, Ho, Theodore, Riffle, Stacy, Keller, Kylie, Kim, Soo-Jeong
Formato: research tables/charts Journal Article
Publicado: Springer Nature Jun2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jun2025
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      pub: Springer Nature
      place: New York, New York
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        10.1007/s10803-023-06179-0
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      ppf: 1976
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        atl: Factors Associated with Pre-Research Recruitment in Autism and Related Developmental Disorders.
      aug:
        au:
          Karnik, Ashwin
          Malhi, Gurjot
          Ho, Theodore
          Riffle, Stacy
          Keller, Kylie
          Kim, Soo-Jeong
        affil: https://ror.org/00cvxb145 Department of Psychiatry and Behavioral Sciences, University of Washington, 1959 NE Pacific St, 98195, Seattle, WA, USA
      sug:
        subj:
          Autism Spectrum Disorder Risk Factors
          Developmental Disabilities Risk Factors
          Research Subject Recruitment
          Health Status Disparities
          Human
          Male
          Female
          Child
          Adolescence
          Consent (Research)
          Medicaid
          Sociodemographic Factors
          Income
          Diversity, Equity, Inclusion
          Race Factors
          Insurance, Health
          Child: 6-12 years
          Adolescent: 13-18 years
          Male
          Female
      ab: Purpose: Access to research programs and increased diversity in research enrollment may be key to improving diverse populations' health and healthcare outcomes. To facilitate research recruitment, a Research Registry ("Registry"), a pre-recruitment database, was developed at an urban tertiary Autism Center ("Autism Center"). In this study, we examined whether disparities in research participation occur in the pre-research recruitment (pre-recruitment) stage. Methods: We compared demographic factors of patients seen at the Autism Center (but not enrolled in the Registry) vs. patients enrolled in the Registry. We also examined whether demographic factors differ among the Registry participants who were enrolled in the Registry by signing an informed consent form (ICF) vs. by returning a research interest form (RIF). Results: A total of 18,522 patients (including 1092 patients in the Registry with 403 patients via ICF and 689 patients via RIF) were included in this study. English as the primary language, White race, Non-Hispanic ethnicity, and younger age at their first clinic encounter were associated with the Registry. In the Registry sample, the RIF group had a higher proportion of non-English as a primary language, Medicaid insurance, longer distance from the Autism Center, and lower median household income (based on their ZIP code) than the ICF group. Conclusions: This study suggests that disparities may have existed in the pre-research recruitment stage. To achieve equity in both clinical and research advancements in autism and related developmental disorders, further efforts are needed to equitably disseminate research opportunities to patients of diverse backgrounds.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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