ANN ARBOR, MICH./DEC. 3, 2018 – The National Hemophilia Foundation (NHF) has selected ArborMetrix as its technology and analytics partner to deliver an innovative and groundbreaking patient-reported research registry. NHF’s overarching aim for the registry is to support research activities that will improve the quality of life of persons with a bleeding disorder and enhance the ability of external researchers to discover transformational therapies and, ultimately, contribute to finding a cure.
By harnessing the power of patient-sourced data and creating an interactive experience for patients to engage in their health, the new registry will achieve multiple objectives that include:
The NHF Registry will leverage ArborMetrix’s Engagement Solution, including Patient-Reported Outcomes and Patient Engagement Portal. Patients and caregivers will be able to easily share health-related information and receive information on treatment and outcomes-related decisions and progress, as well as specialized patient education content. The solution will create a longitudinal data asset suitable for research and quality improvement. Through these powerful tools, NHF will empower its community to track and analyze patient-centered outcomes over the long term, and connect patient-sourced data to outcomes.
“What the NHF is establishing in this new registry is phenomenal,” said Kurt Skifstad, PhD, Chief Executive Officer, ArborMetrix. “The NHF and its community understand that people with bleeding disorders are at the center and their experiences, health status, and outcomes should be the driving force of research and quality improvement. To value the patient perspective and bring the power of technology and analytics to it will bring NHF closer to achieving its mission.”
About the National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
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