Hereditary Neuropathy Foundation Awarded a $50,000 Engagement Award by the Patient-Centered Outcomes Research Institute

Mar 18, 2016, 05:00 ET from Hereditary Neuropathy Foundation

NEW YORK, March 18, 2016 /PRNewswire-USNewswire/ -- The Hereditary Neuropathy Foundation (HNF) has been approved for a Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support a Patient-Centered Reported Outcomes Summit (PCROS). The HNF Patient Centered Outcomes Summit will be held at 3 West Club in New York City on October 6, 2016. The mission of the Summit will be to discuss current research and identify gaps in the field of Patient-Centered Outcomes and Comparative Effectiveness Research (PCOR/CER) for the Charcot-Marie-Tooth (CMT) and Inherited Peripheral Neuropathies (IPN) Communities. This important event will include patients with all forms of IPNs, caregivers, clinicians, researchers, funding agencies, and industry to discuss barriers and opportunities impacting the translation of patient-reported outcomes into objective measures.

Allison Moore, Hereditary Neuropathy Foundation's CEO, will lead the engagement project at HNF, along with a team of patients, caregivers, scientists and clinicians. "HNF believes that patients and advocates working alongside funded scientists and clinicians will lead to the identification of the critical issues and gaps to further enhance PCOR," shares Moore.  "This may enable developments that are most likely to show direct benefit for patients to move research toward a more patient-centric approach."

CMT is a progressive neuromuscular disease that is extremely debilitating, causing muscle weakness, fatigue, and atrophy of the extremities. Often patients will lose the normal use of hands, arms, legs and feet, requiring mobility devices to stay active. Currently there is no cure for CMT.

Other HNF leads include Joy Aldrich, HNF Advocacy Director and Sean Ekins, Ph.D., HNF's Chief Science Officer. Aldrich, a CMT1A patient and passionate advocate, runs HNF's online CMT Inspire Support Group Community.  Aldrich will help identify patients to participate in the Technical Planning Committee for the Summit, as well as coordinate speakers, moderators, and panelists. Ekins, an expert on rare disease drug discovery and founder of two rare disease companies, will be responsible for developing the scientific agenda for the Summit and reporting on Summit findings afterwards.

The project will focus on the unique voices of patients, families and advocates to play a central role in the research process from topic generation to dissemination and the implementation of results to share with the CMT and IPN Community. In addition, patients will have the chance to hear the latest in research developments, participate in panel discussions with clinicians, and voice their needs and priorities in regards to CMT research and treatments.

The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI's work.

"This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake," said Jean Slutsky, PCORI's Chief Engagement and Dissemination Officer. "We look forward to following the project's progress and working with the Hereditary Neuropathy Foundation to share the results."

Hereditary Neuropathy Foundation's project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI's engagement goals and objectives, as well as program criteria. For more information about PCORI's funding to support engagement efforts, visit


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.

About Hereditary Neuropathy Foundation (HNF)

HNF, a non-profit 501(c) 3 organization whose mission is to increase awareness and accurate diagnosis of CMT and related inherited neuropathies, support patients and families with critical information to improve quality of life, and funds research that will lead to treatments and cures. HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government and industry, to develop treatments for CMT. Currently TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum.

Media Contact – Allison Moore, Founder/CEO, 212-722-8396

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SOURCE Hereditary Neuropathy Foundation