Patient-Centered Research

Our current survey, conducted in partnership with PMD Alliance, on Assessing Access to Medications for People Living with Parkinson’s or Other Movement Disorders is now available. ALL individuals with PD are invited to participate. CLICK HERE TO BEGIN SURVEY.

Public policy impacts people living with Parkinson’s and other movement disorders every day. Accessing the medicines and therapies we need, what hurdles we have to jump through to get them, how much we pay for them and what new therapies advance through the pipeline—public policy influences it all.

Instead of making assumptions on what impacts our community’s access to medicines, our new Access Survey asks key questions of people living with PD and their care partners. The results will help inform where the Parkinson’s community’s voice is most important and impactful, allowing us to positively influence the policymaking process to ensure we have access to the most effective medicines and treatments–today and in the future.

The data collection for this report will conclude on January 21, 2023.

Your participation matters. The “voice” of people with PD needs to be heard. If you have any questions please call us toll-free at 800-579-8440 or contact us.

The Parkinson Alliance strongly believes that the patient’s voice is essential when evaluating new treatments and healthcare in general. Since 2002, we have conducted Patient-Centered Outcomes Research to:

• Validate and support the individual’s experience
• Empower people with empirically-based recommendations that may improve
  quality of life; and
• Bridge the gap between patients and care providers, scientists and industry.

Our work captures a broad scope of symptoms including, motor and non-motor symptoms, as well as other facets of well-being such as resilience and coping skills.We believe that as someone affected by Parkinson’s disease, you have unique power to advance research. Your input can provide the firsthand knowledge that helps identify and answer the questions that will improve the quality of life for everyone affected by the disease.

Our unique approach engages individuals with Parkinson’s, carepartners, and clinicians alike. Thousands of people have participated in our research survey process, which identifies issues that impact quality of life; while our consensus conferences pinpoint expert knowledge to address these issues.

Our goal is to provide reliable useful information to help researchers better understand and treat Parkinson’s, and to help people make informed decisions about their care to improve outcomes and alter the course of the disease.

“We are proud to have been one of the first to include the voices of people with Parkinson’s in everything we do. New and better treatments would not exist otherwise.”

— Margaret Tuchman
Founder, The Parkinson Alliance, and person with Parkinson’s disease.

Read our latest research survey reports below.

Download a PDF Summary of Research Projects