News release from Parkview Health:
Parkview Research Center selected for a financial award to help develop a global Rare Disease Registry
(June 19, 2015) – The Parkview Research Center located in the Parkview Mirro Center for Research & Innovation has been selected for a Patient Centered Outcomes Research Institute (PCORI) financial award to strengthen research partnerships with the National Institutes of Health, the National Organization for Rare Diseases, and the Fibrous Dysplasia Foundation for the development of a global Rare Disease Registry.
The Rare Disease Registry will facilitate collaboration between researchers, physicians and patients, forming new, and strengthening existing, research partnerships.
As the number of patients with rare disorders is small and scattered widely geographically, online registries have become the gold standard for accelerating progress in rare disease research. When registries are patient-driven, they can be powerful tools that enable participants to tell their story while collecting information that can be used to improve health outcomes and develop appropriate clinical effectiveness research questions which are meaningful to patients and the healthcare community that serves them.
Little is known about the rare orthopedic condition Fibrous Dysplasia and related disorders associated with excess bone growth. For patients, severe pain and deformity can occur; and, when the affected area is in the craniofacial region they can experience migraines, blindness, and interference with eating and painful social stigma that goes along with “looking different.” There is no cure for the condition, and current treatments are typically aimed at managing symptoms which can include severe pain and deformity.
The Parkview Mirro Center for Research and Innovation’s mission is to provide opportunities that will open new doors and, potentially, revolutionize healthcare and save lives of individuals. This mission is an extension of the commitment that Parkview has made to the communities it serves throughout northeast Indiana, northwest Ohio, and south-central Michigan.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.