Literature DB >> 35713775

Moving the Dial Toward Equity in Parkinson's Disease Clinical Research: a Review of Current Literature and Future Directions in Diversifying PD Clinical Trial Participation.

Jennifer Adrissi1, Jori Fleisher2.   

Abstract

PURPOSE OF REVIEW: Parkinson's disease (PD), the second most common neurodegenerative disease, has a worldwide prevalence projected at 12 million by 2040. While PD has been extensively researched, our understanding of the disease is based on research studies that include mostly participants of European descent. The lack of diversity in clinical trial enrollment has limited the generalizability of scientific discoveries in the field. Here, we discuss contributors to racial and ethnic disparities in PD clinical research enrollment, summarize recently proposed and tested interventions, and propose next steps to increase equity and representation in PD research. RECENT
FINDINGS: Enrollment in PD clinical research is vulnerable to upstream disparities and inequities from PD awareness to access to specialized PD centers. While additional research is still needed, recent studies have identified some potential strategies for increasing underrepresented minority (URM) recruitment including increasing the availability of linguistically and culturally diverse research materials and team members, partnering with community organizations, and forming relationships with URM-serving community physicians. To move the dial toward equity in PD research, it will be necessary to implement known successful strategies and further investigate additional contributors to the underrepresentation of URMs in PD clinical research while developing and testing interventions to address these factors.
© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

Entities:  

Keywords:  Clinical trials; Diversity; Equity; Parkinson’s disease; Research

Mesh:

Year:  2022        PMID: 35713775      PMCID: PMC9578442          DOI: 10.1007/s11910-022-01212-8

Source DB:  PubMed          Journal:  Curr Neurol Neurosci Rep        ISSN: 1528-4042            Impact factor:   6.030


  53 in total

1.  Physician perspectives on cancer clinical trials and barriers to minority recruitment.

Authors:  Shawna V Hudson; Dana Momperousse; Howard Leventhal
Journal:  Cancer Control       Date:  2005-11       Impact factor: 3.302

2.  Knowledge and attitudes about Parkinson's disease among a diverse group of older adults.

Authors:  Sarah Pan; Julie Stutzbach; Suzanne Reichwein; Brian K Lee; Nabila Dahodwala
Journal:  J Cross Cult Gerontol       Date:  2014-09

3.  Primary care physicians' views about gatekeeping in clinical research recruitment: A qualitative study.

Authors:  Marilys Guillemin; Rosalind McDougall; Dominique Martin; Nina Hallowell; Alison Brookes; Lynn Gillam
Journal:  AJOB Empir Bioeth       Date:  2017-03-16

4.  Prevalence of Parkinson's disease in the biracial population of Copiah County, Mississippi.

Authors:  B S Schoenberg; D W Anderson; A F Haerer
Journal:  Neurology       Date:  1985-06       Impact factor: 9.910

Review 5.  Publication of recruitment methods in focus group research of minority populations with chronic disease: a systematic review.

Authors:  Chima D Ndumele; Genna Ableman; Beverly E Russell; Edith Gurrola; Leroi S Hicks
Journal:  J Health Care Poor Underserved       Date:  2011-02

Review 6.  Epidemiology of Parkinson's disease.

Authors:  Lonneke M L de Lau; Monique M B Breteler
Journal:  Lancet Neurol       Date:  2006-06       Impact factor: 44.182

7.  A randomized recruitment intervention trial in Parkinson's disease to increase participant diversity: early stopping for lack of efficacy.

Authors:  Barbara C Tilley; Arch G Mainous; Jordan J Elm; Elisabeth Pickelsimer; Lea H Soderstrom; Marvella E Ford; Vanessa A Diaz; Laura A Siminoff; Keith Burau; Daniel W Smith
Journal:  Clin Trials       Date:  2012-04       Impact factor: 2.486

8.  Lay persons' beliefs and knowledge about Parkinson's disease: prevalence and socio-demographic correlates.

Authors:  Perla Werner; Amos D Korczyn
Journal:  Parkinsonism Relat Disord       Date:  2010-01-12       Impact factor: 4.891

9.  Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson's Disease Research: The Fox Insight Cohort Experience.

Authors:  Roseanne D Dobkin; Ninad Amondikar; Catherine Kopil; Chelsea Caspell-Garcia; Ethan Brown; Lana M Chahine; Connie Marras; Nabila Dahodwala; Sneha Mantri; David G Standaert; Marissa Dean; Ira Shoulson; Kenneth Marek; Andrea Katz; Monica Korell; Lindsey Riley; Caroline M Tanner
Journal:  J Parkinsons Dis       Date:  2020       Impact factor: 5.568

10.  Racial disparities in neurologic health care access and utilization in the United States.

Authors:  Altaf Saadi; David U Himmelstein; Steffie Woolhandler; Nicte I Mejia
Journal:  Neurology       Date:  2017-05-17       Impact factor: 9.910

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  1 in total

1.  IN-HOME-PD: The effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson's disease.

Authors:  Jori E Fleisher; Serena P Hess; Ellen C Klostermann; Jeanette Lee; Erica Myrick; Daniela Mitchem; Claire Niemet; Katheryn Woo; Brianna J Sennott; Maya Sanghvi; Natalie Witek; James C Beck; Jayne R Wilkinson; Bichun Ouyang; Deborah A Hall; Joshua Chodosh
Journal:  Parkinsonism Relat Disord       Date:  2022-08-07       Impact factor: 4.402

  1 in total

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