Published: 01/11/2017 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society Approved for a $50,000 Funding Award by the Patient-Centered Outcomes Research Institute

October 2017 — The Ehlers-Danlos Society has been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Co-Morbidity Coalition.

The Ehlers-Danlos Society will use 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 will bring together the International Consortium on Ehlers-Danlos Syndromes and Related Disorders and organizations that represent different co-morbidities associated with the Ehlers-Danlos syndromes. Our collaborating organizations include the Chiari and Syringomyelia Foundation, Dysautonomia International, 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.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”

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.

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