Adamas Pharmaceuticals, Inc. (Nasdaq: ADMS), a company dedicated to developing and delivering medicines that make a meaningful difference to people affected by neurological diseases, today announced the launch of “Picture More Time,” a disease education campaign focused on raising awareness and understanding of OFF time and dyskinesia and the emotional and social impacts these motor complications have on people with Parkinson’s disease (PD) and their care partners.
In partnership with the Parkinson & Movement Disorder Alliance (PMD Alliance), Adamas co-sponsored a survey with 775 respondents, including 527 people with PD and 248 care partners. Seventy-eight percent of those surveyed reported an incomplete understanding of OFF time and dyskinesia.
The results also showed that people with PD and care partners find these motor complications challenging, as well as stigmatizing and socially disabling. Specifically, they reported:
- Experiencing discomfort in daily tasks such as driving or carrying a grandchild: 51% of people with PD who had dyskinesia and OFF indicated that the impact of dyskinesia made them uncomfortable or nervous in some activities, such as carrying a grandchild. Similarly, 64% of care partner respondents reported that watching their partner experiencing OFF or dyskinesia made them uncomfortable or nervous when their loved one engages in everyday activities.
- Disruption to their hobbies and social activities: 49% of people with PD reported the impact of dyskinesia stopped them from doing hobbies and/or made them less likely to be social with friends.
- Feeling socially isolated and lonely: 41% of people with PD reported that motor complications felt socially isolating and made them feel lonely. Correspondingly, 34% of care partners surveyed reported the impact of motor complications made them and their loved one feel isolated and lonely.
As a result of these findings, Adamas launched an educational resource www.PictureMoreTimePD.com to help patients and care partners identify and understand OFF and dyskinesia PD motor complications, as well as the emotional and social impact they may have on everyday activities and gatherings.
“We are proud to have supported this survey, which highlights the need for better understanding of the impact of PD motor complications, not only from the perspective of the person with Parkinson’s, but also from the care partner perspective,” said Sarah Jones, CEO, PMD Alliance. “The survey results indicate that the care partner is very much affected by their partner’s gradual withdrawal from public outings and social engagements as PD motor complications worsen. We believe in challenging the status quo and feel confident that this comprehensive disease education program from Adamas will empower people with Parkinson’s as well as their care partners to talk with their physicians in pursuit of better motor control and emotional well-being.”
“We heard loud and clear from the Parkinson’s community that there remains confusion about OFF, dyskinesia, and the impact these debilitating motor complications may have on someone with PD and their care partner,” said Adrian Quartel, M.D., Chief Medical Officer, Adamas. “By offering these educational resources, our goal is that people with PD and their care partners are equipped to work with their doctors to maximize good movement control so they may have an active and socially-connected lifestyle.”
Resources available on the Picture More Time website include information on OFF and dyskinesia motor complications, a guide to enable productive conversations with physicians and healthcare providers, PD support group discussion guides, and other materials to support people with PD, their families, and their care partners. To learn more, visit www.PictureMoreTimePD.com.
About Parkinson’s disease, OFF and dyskinesia
Parkinson’s disease (PD) is a progressive, neurodegenerative disorder caused by the gradual loss of brain cells that produce the neurotransmitter dopamine and affects approximately one million people in the United States. Dopamine decline in the brain results in a wide range of motor (movement-related) and non-motor symptoms. As the disease progresses, people taking levodopa-based therapy are likely to experience reemergence or sudden return of stiffness, rigidity and tremors, referred to as OFF episodes between medication doses, that may be unpredictable. The primary treatment for PD is with levodopa; however, over time levodopa may lead to involuntary, uncontrolled movements known as dyskinesia. The abrupt and unpredictable transitions between episodes of dyskinesia, normal movement, and OFF lead to considerable impact on patients’ lives.
About Parkinson & Movement Disorder Alliance
Parkinson & Movement Disorder Alliance is an independent, national nonprofit dedicated to providing opportunities for people to learn, live more fully and spark meaningful connections around them. PMD Alliance serves people across the United States and is not affiliated with any medical practice or institution. PMD Alliance is committed to keeping our community safe and healthy. To learn more about the organization visit www.PMDAlliance.org.
At Adamas, our vision is clear – to deliver innovative medicines that reduce the burden of neurological diseases on patients, caregivers, and society. We are a fully integrated company focused on growing a portfolio of therapies to address a range of neurological diseases. For more information, please visit www.adamaspharma.com.
Source: Adamas Pharmaceuticals, Inc.
Vice President of Corporate Communications