Barriers to diverse clinical trial participation in Duchenne muscular dystrophy: Engaging Hispanic/Latina caregivers and health professionals.
Norah L CrossnohereNicola B CampoamorEric CaminoErin DresnickDaphne Oluwaseun MartschenkoViana RodriguesSusan ApkonAlexis HazlettDhruv MitturPriscilla E RodriguezJohn F P BridgesNiki ArmstrongPublished in: Orphanet journal of rare diseases (2024)
Numerous barriers hinder participation in Duchenne clinical trials for Hispanic/Latino families and other populations experiencing health disparities. Addressing these barriers necessitates interventions across multiple stages of the clinical trial enrollment process. Recommendations to enhance participation opportunities include developing clinical trial decision support tools, translating prominent clinical trials educational resources such as ClinicalTrials.gov, fostering trusting family-provider relationships, engaging families in clinical trial design, and establishing ethical guidelines for pre-screening potentially non-compliant patients.
Keyphrases
- clinical trial
- duchenne muscular dystrophy
- physical activity
- phase ii
- end stage renal disease
- open label
- phase iii
- double blind
- african american
- study protocol
- healthcare
- newly diagnosed
- ejection fraction
- clinical practice
- chronic kidney disease
- primary care
- public health
- palliative care
- mental health
- peritoneal dialysis
- randomized controlled trial
- prognostic factors
- affordable care act
- patient reported