Our current survey on Sleep and Fatigue in Parkinson’s Disease: The Patient’s Perspective is now available. ALL individuals with PD are invited to participate. CLICK HERE TO BEGIN SURVEY.

Sleep and fatigue are highly prevalent, are common symptoms in Parkinson’s disease (PD), and can adversely impact day-to-day experiences and quality of life. A variety of sleep disorders may occur in PD, including, but not limited to, excessive daytime sleepiness, insomnia (difficulty falling and/or staying asleep), and sleep-related breathing disorders, and fatigue can be a related to and independent of sleep disturbance. Improving our understating about sleep disturbance and fatigue in PD for individuals may improve treatment intervention and increase the general sense of well-being for individuals with PD.

Through your participation in our survey, we will gain insights into the perspective of individuals with PD, as it relates to sleep and fatigue, intervention, and quality of life.

The data collection for this report will conclude on December 1, 2021.

Your participation matters. The “voice” of people with PD needs to be heard.  If you would like to participate by mail, 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