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Brief Report: Recruitment and Retention of Minority Children for Autism Research / Irina ZAMORA in Journal of Autism and Developmental Disorders, 46-2 (February 2016)
[article]
Titre : Brief Report: Recruitment and Retention of Minority Children for Autism Research Type de document : Texte imprimé et/ou numérique Auteurs : Irina ZAMORA, Auteur ; Marian E. WILLIAMS, Auteur ; Marcia HIGAREDA, Auteur ; Barbara Y. WHEELER, Auteur ; Pat LEVITT, Auteur Année de publication : 2016 Article en page(s) : p.698-703 Langues : Anglais (eng) Mots-clés : Minorités Autism spectrum disorder Recruitment Latino Genetic research Index. décimale : PER Périodiques Résumé : Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1–17, 2002; Kelly et al. in J Nat Med Assoc 97:777–783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5–17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2603-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280
in Journal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.698-703[article] Brief Report: Recruitment and Retention of Minority Children for Autism Research [Texte imprimé et/ou numérique] / Irina ZAMORA, Auteur ; Marian E. WILLIAMS, Auteur ; Marcia HIGAREDA, Auteur ; Barbara Y. WHEELER, Auteur ; Pat LEVITT, Auteur . - 2016 . - p.698-703.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.698-703
Mots-clés : Minorités Autism spectrum disorder Recruitment Latino Genetic research Index. décimale : PER Périodiques Résumé : Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1–17, 2002; Kelly et al. in J Nat Med Assoc 97:777–783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5–17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2603-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280 Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline / Anila M. D'MELLO in Autism Research, 15-10 (October 2022)
[article]
Titre : Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline Type de document : Texte imprimé et/ou numérique Auteurs : Anila M. D'MELLO, Auteur ; Isabelle R. FROSCH, Auteur ; Cindy E. LI, Auteur ; Annie L. CARDINAUX, Auteur ; John D. E. GABRIELI, Auteur Article en page(s) : p.1929-1940 Langues : Anglais (eng) Mots-clés : Abide Ados Autism Physical Health Survey Channel 4 Images LifeLines Musicial Universe Spark autism spectrum disorder diagnosis exclusion criteria females inclusion criteria recruitment sex differences Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of autistic females, research studies consistently enroll small samples of females, or exclude females altogether. Importantly, researchers often rely on standardized measures to confirm diagnosis prior to enrollment in research studies. We retrospectively analyzed the effects of one such measure (Autism Diagnostic Observation Schedule, ADOS) on research inclusion/exclusion rates by sex in autistic adults, all of whom had a preexisting community diagnosis of autism (n = 145, 95 male, 50 female). Using the ADOS as a confirmatory diagnostic measure resulted in the exclusion of autistic females at a rate over 2.5 times higher than that of autistic males. We compared sex ratios in our sample to those in other large, publically available datasets that rely either on community diagnosis (6 datasets, total n = 42,209) or standardized assessments (2 datasets, total n = 214) to determine eligibility of participants for research. Reliance on community diagnosis rather than confirmatory diagnostic assessments resulted in significantly more equal sex ratios. These results provide evidence for a "leaky" recruitment-to-research pipeline for females in autism research. LAY SUMMARY: Despite efforts to increase the representation of autistic females in research, studies consistently enroll small samples of females or exclude females altogether. We find that despite making up almost 50% of the initially recruited sample based upon self-report of community diagnosis, autistic females are disproportonately excluded from research participation as a result of commonly used autism diagnostic measures. In our sample, and several other publically available datasets, reliance on community diagnosis resulted in significantly more equal sex ratios. En ligne : http://dx.doi.org/10.1002/aur.2795 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism Research > 15-10 (October 2022) . - p.1929-1940[article] Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline [Texte imprimé et/ou numérique] / Anila M. D'MELLO, Auteur ; Isabelle R. FROSCH, Auteur ; Cindy E. LI, Auteur ; Annie L. CARDINAUX, Auteur ; John D. E. GABRIELI, Auteur . - p.1929-1940.
Langues : Anglais (eng)
in Autism Research > 15-10 (October 2022) . - p.1929-1940
Mots-clés : Abide Ados Autism Physical Health Survey Channel 4 Images LifeLines Musicial Universe Spark autism spectrum disorder diagnosis exclusion criteria females inclusion criteria recruitment sex differences Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of autistic females, research studies consistently enroll small samples of females, or exclude females altogether. Importantly, researchers often rely on standardized measures to confirm diagnosis prior to enrollment in research studies. We retrospectively analyzed the effects of one such measure (Autism Diagnostic Observation Schedule, ADOS) on research inclusion/exclusion rates by sex in autistic adults, all of whom had a preexisting community diagnosis of autism (n = 145, 95 male, 50 female). Using the ADOS as a confirmatory diagnostic measure resulted in the exclusion of autistic females at a rate over 2.5 times higher than that of autistic males. We compared sex ratios in our sample to those in other large, publically available datasets that rely either on community diagnosis (6 datasets, total n = 42,209) or standardized assessments (2 datasets, total n = 214) to determine eligibility of participants for research. Reliance on community diagnosis rather than confirmatory diagnostic assessments resulted in significantly more equal sex ratios. These results provide evidence for a "leaky" recruitment-to-research pipeline for females in autism research. LAY SUMMARY: Despite efforts to increase the representation of autistic females in research, studies consistently enroll small samples of females or exclude females altogether. We find that despite making up almost 50% of the initially recruited sample based upon self-report of community diagnosis, autistic females are disproportonately excluded from research participation as a result of commonly used autism diagnostic measures. In our sample, and several other publically available datasets, reliance on community diagnosis resulted in significantly more equal sex ratios. En ligne : http://dx.doi.org/10.1002/aur.2795 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488