ONTARIO, Calif.–(BUSINESS WIRE)–The Sickle Cell Disease Foundation, in partnership with the Center for Inherited Blood Disorders and The Hills Tandem, is thrilled to announce the You Are A Marvel (YAAM) real-world data (RWD) initiative and its progress toward a holistic approach to patient-centered care and personalized medicine. The ground-up endeavor, created by and for people living with SCD, focuses on improving quality of care, health outcomes, and health equity for all underserved patient populations living with complex chronic diseases.
“At its core, YAAM represents a shift in how we approach health care research and delivery,” said Mary Brown, President & CEO, Sickle Cell Disease Foundation. “Inspired by the wisdom of cellist Pablo Casals, who recognized the innate marvel within each person, YAAM strives to honor each person touched by sickle cell disease as the marvel they truly are rather than just another data point. In doing so, we aspire to transform the health care experience from one marked by commonality to one characterized by the uniqueness and dignity of each individual.”
The YAAM initiative started in 2019 with a focus on collecting and analyzing patient-generated health data to accurately reflect real world experiences of individuals living with sickle cell disease (SCD). The initiative’s research focus then expanded to identify potential triggers to SCD crisis in young adults with the goal of predicting a crisis in time for intervention, thus avoiding the crisis altogether and/or minimizing tissue damage caused by hypoxia.
“We cannot overstate how important it is that this initiative was designed by and for individuals living with sickle cell disease who are highly motivated to collaborate on tools that can radically improve daily life as well as long-term health,” said Jennifer Fields, Individual Living with SCD; Implementation Strategist, Sickle Cell Disease Foundation; Founder & President, The Hills Tandem. “As this initiative continues to unfold, we look forward to providing a new research model and software platform for clinical teams to learn more about their patients and ultimately improve quality of life and health outcomes beyond medications and treatments alone.”
The YAAM initiative ensures that the voices and experiences of individuals living with SCD are at the forefront of research and innovation. YAAM is a collaboration of patients, clinicians, researchers, community organizations, and other key stakeholders to promote self-agency and the development of quality improvements, products, and services tailored to patients’ needs. Long-term, the RWD initiative will look to expand the model to encompass a spectrum of complex chronic diseases.
To date, YAAM has already achieved significant milestones, with the completion of two pivotal RWD projects, including a 15-patient Quality Improvement (QI) study funded by SCDF and a 50-patient IRB-approved study funded by Pfizer. In each study, participants collected six weeks of real-world data, including biometric, environmental, symptom, and other patient relevant data. The 50-patient study recorded 2,823 participant days and more than 73 million individual data points. Together, the data sets provide the start of information needed to discover triggers to pain crises and other insights to guide precision medicine approaches. These projects represent the first steps toward realizing YAAM’s ambitious vision to transform care for one of the most medically underserved and neglected patient populations.
For more information about the You Are A Marvel Real-World Data Initiative, please visit: www.scdfc.org/yaam
About the Sickle Cell Disease Foundation
The Sickle Cell Disease Foundation (SCDF) was incorporated in 1957 and is the first and oldest Sickle Cell Disease community-based organization of its kind in the nation. As the only organization in California approved to provide Hemoglobin-Trait Counseling Services and direct the Sickle Cell Educator/Counselor Certification Training Course, SCDF provides life-enhancing education, services and programs for individuals living with Sickle Cell Disease. SCDF broadens public awareness, delivers effective advocacy initiatives, and promotes innovative therapies to ultimately find a cure. Learn more by visiting www.scdfc.org.
About the Center for Inherited Blood Disorders
The Center for Inherited Blood Disorders (CIBD) has cared for hundreds of children and adults in Southern California, offering a safety net clinic that provides health care services specifically to patients with inherited blood disorders. CIBD has been able to increase access to care for those who are economically challenged by providing medical care regardless of ability to pay. CIBD is also a national leader in directing federal initiatives to promote regional blood disorder networks that provide team-based clinical care and uniformly track health outcomes. Learn more by visiting www.cibd-ca.org.
About The Hills Tandem
The Hills Tandem (THT) is an innovative management consulting firm. As a women-owned small business, THT provides a suit of organizational management support including grants management, technical assistance, and related training support services to meet our corporate, non-profit, and government entities’ most mission-critical needs. Collectively, THT has over 40 years of administrative, non-profit and corporate sectors. THT has a proven track record of managing projects and private and federal grants on national and local levels, including FEMA DHS, HRSA, and CDC. Learn more by visiting www.thehillstandem.com.
Contacts
Naty Alvarez
(916) 826-7855
naty@perrycom.com
