Increased distance from a treating proton center is associated with diminished ability to follow patients enrolled on a multicenter radiation oncology registry

Abstract Purpose: Consistent follow-up and data collection are necessary to identify long-term benefits/detriments of proton radiotherapy. Obtaining comprehensive clinical follow-up can be difficult and time-intensive for proton centers. Here we evaluate what factors affect maximum follow-up time among MGH Pediatric Proton Consortium Registry (PPCR) participants. Patients and methods: Enrollment in the PPCR was offered to any patient Results: 333 PPCR patients enrolled between 10/2012 and 03/2017 were included. Median follow-up was 2.4 years ( 121 km from the proton center, had average follow-up that was 0.53 years less compared to those living within 121 km ( p  = 0.0002). Loss in average follow-up was also associated with Medicaid insurance, treatment delay due to insurance, and non-White race. Those co-enrolled on a proton trial or seen at a facility had significantly increased follow-up by almost one year ( p Conclusion: Patients living further from treating proton center have shorter follow-up durations. Increased distance from treating centers may adversely affect clinical outcomes research. Enhanced sharing of medical information among care providers and improved collection methods are needed to effectively evaluate the benefits of proton therapy.