Purpose: The purpose of this study is to describe a model of care for fertility preservation (FP) that integrates clinical care and research through the establishment of the Colorado Oncofertility Program's (COP) patient registry.
Methods: To integrate research and clinical care, the COP developed a multidisciplinary organizational structure and established a prospective registry of demographic information and clinical data of patients who agree to participate in future studies.
Results: The patient registry allows for the integration of clinical care and research as well as streamlined data collection. Since the program launch in January 2012, over 285 patients have been evaluated and >95% of approached patients have agreed to participate in the registry. Data collected are used for research, systematic program evaluation, and utilization of services.
Implications for cancer survivors: As one of the fastest growing oncofertility programs in the country, there is great potential for the COP's registry to contribute to expanding the limited body of literature on the late effects of cancer treatment on fertility and reproductive health in the adolescent and young adult (AYA) oncology population. With the use of web-based bioinformatics, objective data are captured for clinical care, future studies, program evaluation, and quality assurance, without compromising patient autonomy, privacy, and confidentiality or the commitment to personalized care.