Strategies to Promote Diversity in Muscular Dystrophy Research Participation

While the prevalence of muscular dystrophies may vary by gender, race and ethnicity, researchers should design studies to ensure that research findings are applicable to all people affected by the condition being studied.  Here we provide guidance on strategies and resources to reduce obstacles to research participation and encourage outreach to underrepresented people living with muscular dystrophies.

Strategies to overcome obstacles

General

  • Broaden the eligibility criteria as appropriate so as not to exclude potential participants for reasons that are unlikely to affect the outcomes of the study
  • Minimize the burden of participating in the study by reducing the frequency and/or duration of clinic visits and overall time required
  • Allow for clinic visits in evenings or during weekends
  • Conduct periodic evaluation of recruitment and retention strategies

Geographic

  • Select study sites with ample numbers and diversity of potential study participants
  • Select study sites that minimize the travel of study participants
  • Provide support for study participant transportation, accommodations and parking as needed
  • Integrate remote data collection such as smartphone apps or wearables into the study design while also taking into consideration the need for access to broadband communication networks in rural areas

Socioeconomic

  • Have validated translations of consent forms and other relevant study documents available in languages that help ensure achievement of the planned enrollment
  • Include study personnel who are bilingual and culturally sensitive to the planned enrollment population.  Consider enlisting the help of community ambassadors to build trust in the communities of potential study participants
  • Provide daycare for family members during study visits
  • Establish recruitment, enrollment and/or data collection sites in the community at locations that are convenient, familiar and trusted by potential study participants
  • Work with patient advocacy groups in outreach to underrepresented people to increase awareness of the study and to incorporate patient perspectives in the design of the study

 

Additional Guidance

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Form Approved OMB# 0925-0648 Exp. Date 06/2024