The Innovation and Value Initiative (IVI), a non-profit research organization committed to advancing research that focuses on the patient experience, is announcing their Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment launch as part of their Rare Disease Initiative, made possible through funding support from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).
This initiative is part of a collective effort between IVI and EveryLife Foundation for Rare Diseases. IVI and EveryLife will serve as co-chairs of the steering committee and work together with patients and other stakeholders in a series of roundtable dialogues to inform project outcomes.
There are an estimated 10,000 rare diseases and disorders that are often irreversibly progressive, physically disabling, negatively impact life expectancy and effect an estimated 30 million Americans and 300 million people worldwide, a disproportionate percentage of whom are children. As therapy options continue to grow, using the value frameworks for decision-making within the US healthcare system requires consideration of the potential direction with a full range of possible patient health outcomes.
“The only therapies of value are those that are readily accessible to eligible patients. We are delighted to be collaborating with IVI to build an innovative approach that ensures the methods used to inform such decisions within our rare disease space are reflective of timely, patient-centered evidence,” said Annie Kennedy, Chief of Policy, Advocacy & Patient Engagement at the EveryLife Foundation.
Through collaboration with leading experts from across the patient and family, research, and healthcare communities, IVI will engage in a cooperative process to plan for the development of new approaches in patient research and value assessment, ultimately advancing our understanding of patient-centered outcomes in rare disease.
To read IVI’s full press release click here.
