Building a national contraceptive registry for multiple complex medical conditions: Improving contraceptive care for women through engagement
Awarded 2016
Interdisciplinary Innovation (Phase 1) Grants
Emily Godfrey, MD, MPH
University of Washington

Our interdisciplinary partnership needs this Society of Family Planning (SFP) Phase I grant to lay groundwork for developing a proof-of-concept contraceptive registry with patients and advocacy organizations as stewards. We propose using a step-wise approach by focusing first on a single medical condition, cystic fibrosis (CF), aiming to create a platform for additional complex medical conditions. This proposal addresses an SFP top research priority (#5, Improving clinical effectiveness, safety, and quality of contraceptive care) and two secondary priorities (#15, Addressing gaps of the US Medical Eligibility Criteria [USMEC]) and (#25, Identifying strategies for meaningful stakeholder/patient engagement in family planning research). The interdisciplinary Core Team intends to create a CF patient-driven task force (CF-PTF) and engage participants in three virtually based consensus-building discussions. We will also establish a CF Research Advisory Panel (CF-RAP) to review CF-PTF discussions and assist with strategic planning to meet our project goal of developing a proof-of-concept contraceptive registry in Phase II. Our Core Team includes a primary care provider and contraceptive guideline expert, family planning expert and contraceptive registry investigator, technology expert, CF research scientist, and CF patient. This core group has worked together over the past year to identify important family planning issues related to women with CF. This is an opportune time to engage patients, clinicians, and stakeholder organizations to develop a new national registry that will ultimately advance family planning care among a range of women with serious medical conditions (beyond CF).