A model for building a national, patient-driven database to track contraceptive use in women with rare diseases

Abstract

Data on the safety and effectiveness of contraception among women with rare diseases are critical and sorely lacking. To fill this gap, we propose a national, patient-driven database that tracks contraceptive safety and effectiveness among women with rare diseases. We built a pilot database focusing on women with cystic fibrosis in 3 phases: (1) database design input from patients and experts, (2) merging of contraceptive survey data with relevant clinical outcomes from the Cystic Fibrosis Foundation Patient Registry (CFFPR), and (3) forming a data guide to facilitate accessible output data. We successfully linked 62 contraceptive survey variables with 362 relevant clinical outcome variables for 150 patients. This pilot represents a breakthrough in linking contraceptive data to disease-specific outcomes and informs how to build a national, patient-driven contraceptive database for women with rare diseases.

Keywords: contraception; cystic fibrosis; database; rare disease; registries.