(35) Genetic Connections: Increasing Parental Participation in DNA Specimen Research

Title: Genetic Connections: Increasing Parental Participation in DNA Specimen Research

Abstract : As a leading enrolling site for a pediatric biospecimen collection clinical trial, we lacked a family-centered process to include optional parent biospecimen samples. Without a defined process, we missed crucial opportunities to collect scientifically important specimens to improve outcomes for pediatric patients with cancer. Prior to implementing our innovative solution, parental samples could not be collected at their child’s bedside, potentially creating additional distress during the critical diagnostic period.

We aimed to leverage the strengths of a multidisciplinary team to develop a family-centered process for collecting optional parental biospecimens, while remaining compliant with hospital policies. We measured success through parental enrollments in the biospecimen study.

A multidisciplinary team, including representatives from research, clinical teams, and information services, met to brainstorm an ideal workflow that would increase parental enrollments without creating additional burden for families. Operationalizing our idea required innovations to address barriers in our electronic medical record, policy interpretation, and clinical operations. After several iterations, we developed a process that allowed parental specimen collection at their child’s bedside or regular clinic visit. Assigning a research nurse as the process owner significantly improved efficiency and communication with clinical stakeholders.

We initiated our collection process in June of 2024 and collected 16 parent specimens by the end of the year. In the first two months of 2025, we have already collected 12 parent specimens with an additional 2 specimens pending. While we do not have data on the percentage of parents who enroll in the study, we are confident that our process is efficient and family-centered for parents who choose to participate. Hopefully collection of these specimens will enhance our understanding of childhood cancer and treatments and promise a better future for our patients.