Acorda Launches New Tool for People with Parkinson’s to Improve Communication About OFF Periods

“Do Tell” Your Doctor Tool was adapted from a clinically validated questionnaire developed by Duke University, with input from the Parkinson’s community

ARDSLEY, N.Y.--(BUSINESS WIRE)-- Acorda Therapeutics, Inc. (NASDAQ: ACOR) today announced the launch of the “Do Tell” Your Doctor Tool, a new online questionnaire designed to help people with Parkinson’s (PwPs) and their care partners better identify and articulate their symptoms. OFF periods, or the re-emergence of Parkinson’s symptoms, can be difficult to describe because they differ from person to person, and often from day to day.

Incomplete communication about symptoms is an ongoing barrier to providing optimal care to PwPs. The “Do Tell” Your Doctor Tool, which can be accessed at LiveWellDoTell.org, offers a visual guide and glossary to help PwPs and their care partners recognize and record their troublesome symptoms, with the intent of fostering better dialogue with their healthcare provider.

“We have found a consensus among leading movement disorder physicians, PwPs, their care partners and Parkinson’s patient advocacy groups that PwPs have challenges in articulating the impact of their OFF periods during a doctor’s appointment. This results in missed opportunities for discussion,” said Ron Cohen, M.D., Acorda’s President and CEO. “We expect the “Do Tell” Your Doctor Tool to increase effective communication between PwPs and their healthcare providers, thereby enhancing their ability to optimize therapeutic outcomes. We are proud to bring this to the Parkinson’s community.”

The “Do Tell” Your Doctor Tool, part of Acorda’s “Live Well. Do Tell.℠” program, aims to help initiate effective conversations about OFF periods between PwPs and their healthcare providers. The tool was developed with input from a multi-disciplinary Steering Committee of Parkinson’s community leaders. It also underwent beta testing and received feedback from members of InMotion, a nonprofit wellness center in Cleveland, Ohio, that offers a variety of evidence-based exercise, creative movement, support and education programs free of charge to PwPs and their care partners.

“This tool will be a valuable resource to help improve conversations between people with Parkinson’s, their care partners and healthcare providers,” said Karen Jaffe, a person with Parkinson’s and member of both the “Live Well. Do Tell.” Steering Committee and the InMotion Board. “We were excited to offer our input on this important tool to ensure it is user-friendly and serves the needs of our community.”

About the “Do Tell” Your Doctor Tool

The tool is based on the clinically validated Wearing-off Questionnaire 9 (WOQ-9), developed by Dr. Mark Stacey while at Duke University. The questionnaire has been used by healthcare providers during clinical trials and/or doctor’s office visits. Acorda licensed the questionnaire and adapted it to create a tool that can be used directly by PwPs to help them identify and rank the symptoms they experience. Their answers are then used to generate a customized “word cloud” that depicts the symptoms and how bothersome they are at-a-glance.

For more information about “Live Well. Do Tell.” and the “Do Tell” Your Doctor Tool, visit LiveWellDoTell.org.

About “Live Well. Do Tell.”

“Live Well. Do Tell.” is an educational initiative created by Acorda Therapeutics with input from a multi-disciplinary Steering Committee of Parkinson’s community leaders. The goal of the program is to develop tools to address communication gaps among people with Parkinson’s, their care partners and their healthcare providers to inspire a movement for optimal conversations. “Live Well. Do Tell.” includes the Framing OFF Through Art initiative as well as resources such as the “Do Tell” Your Doctor Tool and the Statement of Need, which aim to improve communication of Parkinson’s symptoms.

The Steering Committee includes people with Parkinson’s, care partners, movement disorder specialists, a nurse practitioner and representatives from key advocacy groups including the American Parkinson’s Disease Association, Caregiver Action Network, Davis Phinney Foundation, The Michael J. Fox Foundation, Parkinson’s Foundation, the Parkinson & Movement Disorder Alliance and the World Parkinson Coalition.

About Parkinson’s and OFF Periods

Parkinson’s is a progressive neurodegenerative disorder resulting from the gradual loss of certain neurons. These neurons are responsible for producing dopamine and that loss causes a range of symptoms including impaired movement, muscle stiffness and tremors. As Parkinson’s progresses, people are likely to experience OFF periods, which are characterized by the return of Parkinson’s motor and non-motor symptoms; these can occur even in the presence of regular maintenance therapy. Approximately one million people in the U.S. and 10 million people worldwide are living with Parkinson’s; approximately 40 percent of people with Parkinson’s in the U.S. are estimated to experience OFF periods within five years of treatment.

About Acorda Therapeutics

Acorda Therapeutics develops therapies to restore function and improve the lives of people with neurological disorders. For more information on Acorda’s products and pipeline, visit: https://www.acorda.com/products.

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