MGH-Harvard Center for Reproductive Medicine (NICHD P50)
MGH-Harvard Center for Reproductive Medicine (NICHD P50)
Project Summary
This project combines patient partnerships, co-creation, and web-based technologies to amplify the Center's work and address unmet patient and provider needs related to infertility care. Core C:
1) provides infrastructure & support to magnify impact & dissemination;
2) conducts stakeholder engagement with patients, families & clinicians;
3) develops & validates methods / best practices for rare disease research;
4) develops more person-centered approaches to genomic healthcare and infertility.
Project Timeline
2021-2026
Project Findings
1) Web-based patient meetings have reached >200 rare disease patients across 19 states and 18 countries.
2) We have validated best practices for web-enabled rare disease research,
3) We have delineated the clinical and genetic spectrum of congenital hypogonadotropic hypogonadism,
4) We are co-creating patient-facing materials for primary ovarian insufficiency,
5) We are creating materials for clinicians to foster more person-centered discussions of genetic test results,
6) we are using 'design thinking' to create a user-friendly website
Facts & Figures
Core C had 5 publications and 5 patient meetings in year 1 of the grant. Patients and nursing students alike are involved in the activities of Core C.