Patient-Centered Research

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Our current survey on Non-Motor Symptoms in Parkinson’s Disease is now available. ALL individuals with PD are invited to participate. CLICK HERE

Non-motor symptoms may include sleep disturbance, fatigue, cognitive difficulties (or thinking difficulties), depression, anxiety, hallucinations, sensory changes (i.e., changes in taste and smell; pain), low blood pressure resulting in dizziness or fainting spells, bowel and bladder difficulties, changes in vision, and swallowing difficulties, among others. Non-motor symptoms have been recently identified as one of the most important factors in determining the quality of life of PD patients. The data collection for this report will conclude on December 1, 2018.

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

If you would prefer a paper version of the research 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


Vision and Parkinson’s Disease: The Patient’s Perspective

Swallowing and Parkinson’s Disease: The Patient’s Perspective

Social Support and Parkinson’s Disease: Another Dimension of Well-being

Cognition and Parkinson’s Disease: The Patient’s Perspective

Nutrition and Parkinson’s Disease: The Patient’s Perspective

Patience and Well-being in Parkinson’s Disease

Exercise & Parkinson’s Disease with and without DBS: A Closer Look from the Patient’s Perspective

Autonomic Symptoms in Parkinson’s Disease

Sleep in Parkinson’s Disease: A Comparison Between Those With and Without Deep Brain Stimulation

Falls and Fear of Falling in Parkinson’s disease for Individuals with and without Deep Brain Stimulation

Resilience in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Speech in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Non-Motor Symptoms in Parkinson’s Disease

Quality of Life and Attitude in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Fatigue and Apathy in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Understanding Pain and Parkinson’s Disease for Individuals with and without DBS

A closer look at Balance in Parkinson’s disease for those with and without Deep Brain Stimulation: The patient’s perspective

Speech in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Feedback regarding the research conducted by The Parkinson Alliance

Differential Impact of Coping Styles on Quality of Life for Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

The Relationship between Sleep and Emotional Well-being in Individuals with Parkinson’s disease with and without Deep Brain Stimulation

Sleep in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

Anxiety and Depression in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation

The Parkinson Alliance Quality of Life Scale (PAQLS)

Comparing Quality of Life and Depression in Parkinson's Disease Patients with and without Deep Brain Stimulation

Focus 2 Survey and Focus 2 Report

Focus 1 Survey and Focus 1 Report

The First Report

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The Parkinson Alliance is a nonprofit, tax-exempt charitable organization under section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law. Copyright © 2018 The Parkinson Alliance. All rights reserved.