“Do Tell” Your Doctor Tool was adapted from a
clinically validated questionnaire developed by Duke University,
with input from the Parkinson’s community
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.
Forward-Looking Statement
This press release includes forward-looking statements. All
statements, other than statements of historical facts, regarding
management's expectations, beliefs, goals, plans or prospects
should be considered forward-looking. These statements are subject
to risks and uncertainties that could cause actual results to
differ materially, including: we may not be able to successfully
market Inbrija or any other products under development; risks
associated with complex, regulated manufacturing processes for
pharmaceuticals, which could affect whether we have sufficient
commercial supply of Inbrija to meet market demand; third party
payers (including governmental agencies) may not reimburse for the
use of Inbrija or our other products at acceptable rates or at all
and may impose restrictive prior authorization requirements that
limit or block prescriptions; competition for Inbrija, Ampyra and
other products we may develop and market in the future, including
increasing competition and accompanying loss of revenues in the
U.S. from generic versions of Ampyra (dalfampridine) following our
loss of patent exclusivity; the ability to realize the benefits
anticipated from acquisitions, among other reasons because acquired
development programs are generally subject to all the risks
inherent in the drug development process and our knowledge of the
risks specifically relevant to acquired programs generally improves
over time; we may need to raise additional funds to finance our
operations and may not be able to do so on acceptable terms; the
risk of unfavorable results from future studies of Inbrija
(levodopa inhalation powder) or from our other research and
development programs, or any other acquired or in-licensed programs
; the occurrence of adverse safety events with our products; the
outcome (by judgment or settlement) and costs of legal,
administrative or regulatory proceedings, investigations or
inspections, including, without limitation, collective,
representative or class action litigation; failure to protect our
intellectual property, to defend against the intellectual property
claims of others or to obtain third party intellectual property
licenses needed for the commercialization of our products; and
failure to comply with regulatory requirements could result in
adverse action by regulatory agencies.
These and other risks are described in greater detail in our
filings with the Securities and Exchange Commission. We may not
actually achieve the goals or plans described in our
forward-looking statements, and investors should not place undue
reliance on these statements. Forward-looking statements made in
this press release are made only as of the date hereof, and we
disclaim any intent or obligation to update any forward-looking
statements as a result of developments occurring after the date of
this press release.
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version on businesswire.com: https://www.businesswire.com/news/home/20191022005135/en/
MEDIA CONTACT: Tierney Saccavino (914) 326-5104
tsaccavino@acorda.com
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