Session Information
Date: Thursday, June 8, 2017
Session Title: Parkinson’s Disease: Clinical Trials, Pharmacology And Treatment
Session Time: 1:15pm-2:45pm
Location: Exhibit Hall C
Objective:
To identify and overcome challenges to recruiting minorities in Parkinson’s Disease experimental therapeutic trials.
Background: Inadequate representation of ethnic and minority population poses substantial problems to generalizability of study results.
Methods: A recruitment committee identified barriers to recruitment and formulated strategies to create a culturally favorable model.
Results: Barriers to minority recruitment in Parkinson’s disease clinical trials were categorized into five groups.
1. Patient related: apprehension about study intervention, discontent about placebo arm, lack of family support, co-morbidities, mistrust of healthcare system, low health literacy, mobility issues, visits requiring OFF state assessment, transportation issues, lack of work flexibility, English-only consent form for people with limited English proficiency (LEP).
2. Trial related: frequency and length of trial visits, low reimbursement.
3. Research site related: language barrier, inadequate dissemination of trial information, lack of cultural sensitivity of staff.
4. Sponsor related: lack of translated consent forms and source documents for LEP.
5.Institutional Review Board (IRB) related barriers: Some IRBs present minorities as vulnerable populations, which can deter researchers from enrolling them.
Strategies to overcome challenges are outlined.
1. Patient related: Increased outreach programs to communities and clinics which serve minority population, social media networking, snowball sampling, research ambassadors from patient participants, provide travel reimbursement and tokens of appreciation.
2. Trial and research site related: Increase cultural competency of research staff, increase provider and participant interaction, adequate comfortable waiting lounges with snacks and refreshments.
3. Sponsor related: Utilization of a Video Remote Interpreting services and minimizing OFF medication visit. Provide consent and study documents in languages requested.
4. IRB related: IRBs should have a minority friendly recruitment policy. Encourage use of technology like Skype-like video interpretive services. Validate consent forms translated into other languages.
Conclusions: Multilevel approaches targeting sponsors,IRBs, investigators and clinical trial sites are needed to design and implement culturally competent recruitment strategies to maximize racial diversity in clinical trials.
References:
- Gul RB, Parveen AA. Clinical trials: the challenges of recruitment and retention of participants. J. Clin. Nursing 19, 227–233(2010).
- Picillo M, Kou N, Barone P & Fasano A. 2015. Recruitment strategies and patient selection in clinical trials for Parkinson’s Disease: Going viral and keeping science and ethics at the highest standards. Parkinsonism and Rel Dis (21): 1041-1048.
To cite this abstract in AMA style:
S. Ray, A. Madan, D. Burdick, A. Griffith, P. Agarwal. Improving Racial and Ethnic Diversity in Parkinson`s Disease Clinical Trials [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/improving-racial-and-ethnic-diversity-in-parkinsons-disease-clinical-trials/. Accessed June 15, 2025.« Back to 2017 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/improving-racial-and-ethnic-diversity-in-parkinsons-disease-clinical-trials/