Patient-Centered Research
Join Our Current Survey
Our current survey on Memory and Emotional Health in Parkinson’s Disease is now closed. After the data is analyzed, the results will be published in report form which you are welcome to download at no cost.
Our next survey Sleep and Fatigue in Parkinson’s Disease will be available July 15th.
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.
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
Revisiting Motor Symptoms in Parkinson’s Disease: Motor Symptoms and Quality of Life from Patient’s Perspective
Urinary Symptoms and Parkinson’s Disease: The Patient’s Perspective
Dyskinesias and Off States for Individuals with Parkinson’s Disease: The Patient’s Perspective
Non-Motor Symptoms of Parkinson’s Disease: The Patient’s Perspective
Anxiety and Parkinson’s Disease: The Patient’s Perspective
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
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
