{"doi":"10.1093/jamia/ocab224","title":"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.","journal":"Journal of the American Medical Informatics Association","year":2021,"id":205404,"datarank":0.23079717618521023,"base_score":1.0986122886681096,"endowment":1.0986122886681096,"self_citation_contribution":0.16479184330021646,"citation_network_contribution":0.06600533288499376,"self_endowment_contribution":0.16479184330021646,"citer_contribution":0.06600533288499376,"corpus_percentile":38.17591088419587,"corpus_rank":7993,"citation_count":2,"citer_count":2,"citers_with_citation_signal":1,"citers_with_endowment":1,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.8969,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":599708,"name":"Deena R. Loeffler","orcid":"0000-0003-1750-4216","position":1,"is_corresponding":false},{"id":783805,"name":"Molly Pam","orcid":"0000-0003-2864-234X","position":2,"is_corresponding":false},{"id":488012,"name":"Emily M. Godfrey","orcid":"0000-0003-2408-7828","position":3,"is_corresponding":false},{"id":488017,"name":"Tatiana Josephy","orcid":"0000-0003-2920-1749","position":0,"is_corresponding":true}],"reference_count":33,"raw_metadata":null,"created_at":"2026-07-18T23:51:33.996102Z","pmid":"34679174","pmcid":"PMC8757320","fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}