Our mission is to engage multiple stakeholders in the Parkinson’s community, including advocates, healthcare professionals (HCPs), care partners and people with Parkinson’s, to address the multifaceted barriers people with Parkinson’s and their care partners face in communicating many of the troubling motor and non-motor symptoms of Parkinson’s disease, including symptom re-emergence during OFF periods.
Through “Live Well. Do Tell.” we aim to bring the community together to create a shared understanding, build awareness and develop an approach to communication gaps among people with Parkinson’s, care partners and HCPs. We believe that achieving these goals will help improve assessment of the multi-faceted symptoms and optimize communication between people with Parkinson’s and their care partners with HCPs.
Ron Cohen, M.D., President, CEO and Founder of Acorda Therapeutics, discusses Acorda’s commitment to the Parkinson’s community.
On September 12, 2017, 17 members of the Parkinson’s disease community—including HCPs, advocates, people with Parkinson’s and care partners—met to discuss unmet needs in Parkinson’s and review several studies related to OFF periods.
People with Parkinson’s Journey Study: An Acorda study that explored the experiences of people with Parkinson’s and their care partners from the diagnosis to present day, focusing on OFF periods. 9
In-Office Conversation Study: A two-part, Acorda-sponsored study, conducted by Verilogue, which reviewed recorded physician-patient interactions to capture people with Parkinson’s/HCP conversations about OFF periods.9,10
Mixed Methods Study*: A study conducted by Drs. Connie Marras, Tara Rastagardani and Anna Gagliardi at University Health Network, Toronto and Dr. Melissa Armstrong at University of Florida, which entailed a scoping review of existing literature on the communication and impact of OFF periods, interviews with HCPs, people with Parkinson’s and care partners, and a survey of 200 HCPs, people with Parkinson’s and care partners regarding communication about OFF periods.9,11
The Statement of Need, the first output of “Live Well. Do Tell.”, includes six actions for the Parkinson’s community to help identify and communicate about their symptoms. These actions are based on insights from our inaugural Steering Committee meeting as well as research conducted by Acorda and third parties.
Cynthia Comella, M.D., Professor of Neurological Sciences, Chair of the MDS Publications Oversight Committee and Leadership Task Force, Chair of the Dystonia Study Group and Member of the Movement Disorders Clinical Team at Rush University Medical Center
Alberto Espay, M.D., Director, Professor and Endowed Chair, James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the University of Cincinnati
Connie Marras, M.D., Ph.D., Associate Professor of Neurology of the Edmond J. Safra Program in Parkinson’s Research, NPF Center of Excellence and the Morton and Gloria Shulman Movement Disorders Clinic at the Toronto Western Hospital
Matthew Stern, M.D., Professor Emeritus of Neurology, Perelman School of Medicine, University of Pennsylvania; Former Director, Penn Parkinson’s Disease and Movement Disorders Center; Past President, International Parkinson and Movement Disorder Society
Gwyn Vernon, M.S.N., R.N., C.R.N.P., Nurse Practitioner, University of PA Parkinson’s Disease and Movement Disorder Center at Pennsylvania Hospital; and Co-Founder and National Director of the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation
Robin Kornhaber, M.S.W.
Vice President, Programs and Services, American Parkinson Disease Association
*Steering Committee members/organizations were compensated by Acorda Therapeutics, Inc. for their participation.
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