Literature DB >> 19936905

Brief report: Under-representation of African americans in autism genetic research: a rationale for inclusion of subjects representing diverse family structures.

Claudia L Hilton1, Robert T Fitzgerald, Kelley M Jackson, Rolanda A Maxim, Christopher C Bosworth, Paul T Shattuck, Daniel H Geschwind, John N Constantino.   

Abstract

African American children with autism are seriously under-represented in existing genetic registries and biomedical research studies of autism. We estimated the number of African American children with autism in the St. Louis region using CDC surveillance data and present the outcomes of a concerted effort to enroll approximately one-third of that population into either of two large national genetic autism registries. The results revealed that even after traditional barriers to research participation were addressed and all contacted families expressed a willingness to participate, 67% of the reachable families were disqualified from participation because of family structure alone. Comprehensive efforts-including expansion of eligibility to families of diverse structure-are warranted to facilitate the inclusion of African American children in biomedical research.

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Year:  2010        PMID: 19936905      PMCID: PMC3645854          DOI: 10.1007/s10803-009-0905-2

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  33 in total

1.  Effectiveness of media strategies to increase enrollment and diversity in the Women's Health Registry.

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Review 2.  Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion.

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3.  CALCYON gene variation, schizophrenia, and cocaine dependence.

Authors:  Xingguang Luo; Henry Kranzler; Jaakko Lappalainen; Robert Rosenheck; Dennis Charney; Lingjun Zuo; Joseph Erdos; Daniel P van Kammen; Joel Gelernter
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2004-02-15       Impact factor: 3.568

4.  Costs and strategies in minority recruitment for osteoporosis research.

Authors:  Miriam A Marquez; Joan M Muhs; Ann Tosomeen; B Lawrence Riggs; L Joseph Melton
Journal:  J Bone Miner Res       Date:  2003-01       Impact factor: 6.741

5.  Unequal treatment: confronting racial and ethnic disparities in health care.

Authors:  Alan Nelson
Journal:  J Natl Med Assoc       Date:  2002-08       Impact factor: 1.798

6.  Strategies for recruiting and retaining minorities.

Authors:  Michael R DeBaun; Philip B Gorelick; Sumit Som
Journal:  Front Neurol Neurosci       Date:  2009-03-19

7.  Race differences in the age at diagnosis among medicaid-eligible children with autism.

Authors:  David S Mandell; John Listerud; Susan E Levy; Jennifer A Pinto-Martin
Journal:  J Am Acad Child Adolesc Psychiatry       Date:  2002-12       Impact factor: 8.829

8.  Genetic variation in apolipoprotein D affects the risk of Alzheimer disease in African-Americans.

Authors:  Purnima P Desai; Hugh C Hendrie; Rebecca M Evans; Jill R Murrell; Steven T DeKosky; M Ilyas Kamboh
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2003-01-01       Impact factor: 3.568

Review 9.  Advances in autism genetics: on the threshold of a new neurobiology.

Authors:  Brett S Abrahams; Daniel H Geschwind
Journal:  Nat Rev Genet       Date:  2008-05       Impact factor: 53.242

10.  PDE4B polymorphisms and decreased PDE4B expression are associated with schizophrenia.

Authors:  S Hossein Fatemi; David P King; Teri J Reutiman; Timothy D Folsom; Jessica A Laurence; Susanne Lee; Yu-Ti Fan; Sara A Paciga; Marco Conti; Frank S Menniti
Journal:  Schizophr Res       Date:  2008-04-03       Impact factor: 4.939

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  23 in total

1.  Diagnosis of fragile X syndrome: a qualitative study of African American families.

Authors:  Jeannie Visootsak; Krista Charen; Julia Rohr; Emily Allen; Stephanie Sherman
Journal:  J Genet Couns       Date:  2011-12-02       Impact factor: 2.537

2.  Development and Psychometric Evaluation of the HPV Clinical Trial Survey for Parents (CTSP-HPV) Using Traditional Survey Development Methods and Community Engagement Principles.

Authors:  Jennifer Cunningham; Kenneth A Wallston; Consuelo H Wilkins; Pamela C Hull; Stephania T Miller
Journal:  Clin Transl Sci       Date:  2015-11-04       Impact factor: 4.689

3.  Assessment of Language Abilities in Minority Adolescents and Young Adults With Autism Spectrum Disorder and Extensive Special Education Needs: A Pilot Study.

Authors:  Teresa M Girolamo; Mabel L Rice; Steven F Warren
Journal:  Am J Speech Lang Pathol       Date:  2020-04-23       Impact factor: 2.408

4.  Differences in autism symptoms between minority and non-minority toddlers.

Authors:  Saime Tek; Rebecca J Landa
Journal:  J Autism Dev Disord       Date:  2012-09

5.  Use of a community-based participatory research approach to assess knowledge, attitudes, and beliefs on biospecimen research among Pacific Islanders.

Authors:  Patchareeya P Kwan; Greta Briand; Cevadne Lee; Jonathan Tana Lepule; Jane Ka'ala Pang; Melanie Sabado; Lola Sablan-Santos; Dorothy Schmidt-Vaivao; Sora Tanjasiri; Vanessa Tui'one; Paula H Palmer
Journal:  Health Promot Pract       Date:  2014-01-06

6.  Symptoms of Restless Legs Syndrome in Biological Caregivers of Children with Autism Spectrum Disorders.

Authors:  Maureen Russell; Carol M Baldwin; Darya McClain; Nicole Matthews; Christopher Smith; Stuart F Quan
Journal:  J Clin Sleep Med       Date:  2017-01-15       Impact factor: 4.062

7.  Psychological Well-Being and Parent-Child Relationship Quality in Relation to Child Autism: An Actor-Partner Modeling Approach.

Authors:  Emily J Hickey; Sigan L Hartley; Lauren Papp
Journal:  Fam Process       Date:  2019-03-07

8.  Examining the Role of Race, Ethnicity, and Gender on Social and Behavioral Ratings Within the Autism Diagnostic Observation Schedule.

Authors:  Ashley J Harrison; Kristin A Long; Douglas C Tommet; Richard N Jones
Journal:  J Autism Dev Disord       Date:  2017-09

9.  Ethnicity reporting practices for empirical research in three autism-related journals.

Authors:  Nigel P Pierce; Mark F O'Reilly; Audrey M Sorrells; Christina L Fragale; Pamela J White; Jeannie M Aguilar; Heather A Cole
Journal:  J Autism Dev Disord       Date:  2014-07

10.  Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina.

Authors:  Jamie N Pearson; Amanda L Traficante; Lauren M Denny; Kayla Malone; Evadine Codd
Journal:  J Autism Dev Disord       Date:  2020-01
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