WASHINGTON, DC—A panel of experts at the National Organization for Rare Disorders (NORD) 2024 Breakthrough Summit explored how inclusivity in rare disease clinical research can be improved by bringing trials to where patients live, work, and receive medical care.
Jenifer Waldrop, executive director of the Rare Disease Diversity Coalition, presented the results of a survey that showed underserved populations experience greater strain in managing their lives and caregiving responsibilities, which impacts their mental health and ability to participate in research. Additional factors included logistical barriers, financial strain, lack of trust in the healthcare system, and cultural considerations.
The panel agreed that “decentralized” clinical trials were a big step in the right direction. Jim Palma, executive director of the TargetCancer Foundation, discussed how his group’s fully remote TRACK rare cancer clinical trial used technology and remote data collection to show how this model can reach patients across geographic and demographic boundaries.
“This model has allowed us to really reach patients where they are and ease the process by which they enroll,” Palma said.
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