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Our current survey on Dyskinesia and Off-States in Parkinson’s Disease is now available. ALL individuals with PD are invited to participate, including individuals with and without Dyskinesias. CLICK HERE TO BEING SURVEY.

Dyskinesia (uncontrolled involuntary movements that can look like fidgeting or swaying) and wearing OFF-states are unfortunately a common experience for individuals with PD.  Research has indicated that in patients treated with levodopa, dyskinesia can occur in approximately 50% of patients by 5 years and nearly 90% of patients by approximately 10 years of treatment. Dyskinesia and OFF-states are associated with impaired activities of daily living, decreased health-related quality of life, increased risk of falls, increased health care utilization, and increased strain on care providers. Although there are some improvements in the management of such symptoms, continued research focused on understanding the experience of dyskinesia and OFF-states through the eyes and voice of the person with PD is very important.

The data collection for this report will conclude on June 1, 2019.

Your participation matters. The “voice” of people with PD needs to be heard.

If you would like to participate in a future survey, call us toll-free at 800-579-8440 or contact us.

Read Our Patient-Centered Survey Reports

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