A model for building a national, patient-driven database to track contraceptive use in women with rare diseases. (22nd October 2021)

• Record Type: Journal Article
• Authors: Josephy, Tatiana; Loeffler, Deena R; Pam, Molly; Godfrey, Emily M
• Is Part Of: Journal of the American Medical Informatics Association. Volume 29:Number 2(2022)
• Page Start: 348
• Page End: 353
• Publication Date: 2021-10-22
• Subjects: registries -- database -- contraception -- rare disease -- cystic fibrosis; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocab224
• Languages: English
• ISSNs: 1067-5027

Abstract

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.