The Ehlers-Danlos Society was approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Comorbidity Coalition.
The Ehlers-Danlos Society is using the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and other stakeholders who are focused on addressing the common health issues associated with this group of high morbidity, high-disease-burden conditions, leading to the development of a patient-centered research proposal. The coalition will help to develop partnerships, governance infrastructure, channels of communication, and an outreach plan which will form a solid foundation for future collaborative work.
With the help of PCORI, the Ehlers-Danlos Society has brought together the International Consortium on Ehlers-Danlos Syndromes and Related Disorders and organizations that represent different comorbidities associated with the Ehlers-Danlos syndromes. Our collaborating organizations include the Chiari and Syringomyelia Foundation, Dysautonomia International, Spinal CSF Leak Foundation, and the Mastocytosis Society. Various levels of stakeholders—including researchers, clinicians, patients, and organizational staff—will be represented in this coalition. Together, they will examine the complex interrelationship between the Ehlers-Danlos syndromes and various co-morbidities, identify gaps in research, and establish research priorities for comparative research efforts.
For more information about the PCORI grant, please see our press release here.