A key challenge in treating pediatric populations with rare disease is ensuring equitable access of cellular immunotherapies to children, regardless of their site of primary medical care, racial, or socio-economic status. Clinical trial complexity may impede the enrollment of study participants if multiple clinical assessments or research visits are required, especially if study participants travel significant distances from their primary residence.
The Patient Advocacy Committee of the Consortium is actively working to understand the pediatric immunotherapy patient population better. Through a retrospective study (see abstracts below), we will develop a more complete picture of who participates in immunotherapy trials.
In addition, the committee, with the support of a supplemental grant (3U01TR002487-03S1), is researching the many barriers to patient enrollment by conducting surveys and interviews with both patients/caregivers and providers. Based on our learnings, we will be better able to suggest improvements to the enrollment process that will allow for greater patient access.
Finally, more sites are adopting social media strategies to better reach patients, caregivers and providers in search of trial opportunities.
