Project Summary

Stay-at-home orders due to the global pandemic caused by the novel coronavirus (COVID-19) have resulted in a pause in engagement, participation in, and dissemination of patient-centered outcomes research, presenting a need for research stakeholders to rethink current norms of engagement while creating opportunities for teams to engage and connect remotely. Considering current travel restrictions and the greater risk that travel places on the patient community, training must now be made accessible to women remotely. To deliver that training effectively, virtual and distance methods of engagement need to be identified, explored, and evaluated to understand which methods result in higher continued engagement and community building in order to be best prepared for future emergencies or situations that require social distancing. To solve this problem, HFA seeks to deploy and evaluate a variety of distance engagement methods and strategies to identify promising approaches for sustaining engagement of women affected by rare diseases, specifically bleeding disorders, in patient-centered research in times of social distancing due to COVID-19. These methods and strategies will be implemented utilizing a virtual platform that allows for interactivity and engagement while maintaining social distancing. Results from the evaluation of these activities will be disseminated and implemented across the team’s own bleeding disorders community and through wider outreach to other disease communities through the PCORI portal.

Project Information

Mabel Crescioni, DrPH, JD
Hemophilia Federation of America

Key Dates

12 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 17, 2023