For Immediate Release 
CONTACT:  
Carrie Strehlau and Kyla Clark 
National Bleeding Disorders Foundation 
212-382-3773 
[email protected] 

 

National Bleeding Disorders Foundation Celebrates Five Years of Community Voices in Research 

A community-powered registry documents the experiences of people living with inheritable bleeding disorders and non-affected relatives. 

 

(NEW YORK, NY — March 26, 2024) — This year marks the fifth anniversary of Community Voices in Research (CVR), a community-powered registry led by the National Bleeding Disorders Foundation (NBDF). The registry transforms the experiences of people living with inheritable bleeding disorders and their non-affected relatives into evidence. It offers researchers a way to better understand—directly from the people most affected—what it is like to live with an inheritable bleeding disorder to improve health-related quality of life, treatment, and care. 

“We created CVR because we felt there was an important perspective missing from data collection efforts in the inheritable bleeding disorders community—the voice of lived experience experts or persons who wake up every day impacted by these disorders,” said Maria E. Santaella, Ph.D.(c), NBDF vice president of research strategy. “Since 2019, CVR data has been key in helping us describe this experience, develop research questions based on this information, and launch research studies on important areas of study. CVR is a partnership. It also provides participants access to a Personalized Dashboard where they get linked to other research opportunities and gain access to surveys, the aggregate data collected, vetted educational resources, and publications based on collected data.” 

The registry is open to collaborations, with the goal of making them as simple and transparent as possible. Researchers outside of NBDF may propose studies using CVR as a tool to help answer specific research questions. NBDF always shares data with partners in an aggregate and de-identified manner. 

“Participation in CVR encourages various voices and experiences to be heard and to create change within this dynamic community,” said Phil Gattone, M.Ed., NBDF president and CEO. “We thank everyone for participating over the last five years, and I am excited about what we will accomplish together in the years ahead.” 

The NBDF research team just launched a new comprehensive survey within CVR to provide researchers with greater insight into the lived experience of people in the community. 

“Our focus going forward is to continue improving the quality of life, identify questions that are important to the community, and to encourage participation and enrollment,” Santaella said. “We welcome those affected by inheritable bleeding disorders to comb CVR’s educational resources and join in this unique opportunity to contribute directly to research. It will make a positive impact in the lives of current and future generations.” 

Learn more about Community Voices in Research:

 

About the National Bleeding Disorders Foundation 

The National Bleeding Disorders Foundation (NBDF) is dedicated to finding cures for inheritable blood and bleeding disorders and addressing and preventing these disorders' complications through research, education, and advocacy, enabling people and families to thrive. Today, NBDF serves people across the United States with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. The foundation also supports a network of 50 chapters across the country. To learn more, visit www.hemophilia.org and follow NBDF across social media @nbd_foundation.