Patient-Centered Research - The Parkinson Alliance

Time 2021-11-22 06:07:05

Web Name: Patient-Centered Research - The Parkinson Alliance

WebSite: http://www.dbs4pd.org

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Patient-Centered Research

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Join Our Current Survey

Read Our Patient-Centered Survey Reports

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 related to and independent of sleep disturbance. Improving our understanding 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.

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Read Our Patient-Centered Survey Reports

The Parkinson Alliance strongly believes that the patients 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 individuals experienceEmpower people with empirically-based recommendations that may improve
quality of life; andBridge 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 Parkinsons in everything we do. New and better treatments would not exist otherwise.

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

Read our latest research survey reports below.

Download a PDF Summary of Research Projects

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Memory and Emotional Health in Parkinson’s Disease
Managing Day-to-Day Stress and Resilience in Parkinson’s Disease
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 Parkinsons Disease: The Patients Perspective
Anxiety and Parkinsons Disease: The Patients Perspective
Vision and Parkinsons Disease: The Patients Perspective
Swallowing and Parkinsons Disease: The Patients Perspective
Social Support and Parkinsons Disease: Another Dimension of Well-being
Cognition and Parkinsons Disease: The Patients Perspective
Nutrition and Parkinsons Disease: The Patients Perspective
Patience and Well-being in Parkinsons Disease
Exercise Parkinsons Disease with and without DBS: A Closer Look from the Patients Perspective
Autonomic Symptoms in Parkinsons Disease
Sleep in Parkinsons Disease: A Comparison Between Those With and Without Deep Brain Stimulation
Falls and Fear of Falling in Parkinsons disease for Individuals with and without Deep Brain Stimulation
Resilience in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Speech in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Non-Motor Symptoms in Parkinsons Disease
Quality of Life and Attitude in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Fatigue and Apathy in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Understanding Pain and Parkinsons Disease for Individuals with and without DBS
A closer look at Balance in Parkinsons disease for those with and without Deep Brain Stimulation: The patients perspective
Speech in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Differential Impact of Coping Styles on Quality of Life for Individuals with Parkinsons Disease with and without Deep Brain Stimulation
The Relationship between Sleep and Emotional Well-being in Individuals with Parkinsons disease with and without Deep Brain Stimulation
Sleep in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
Anxiety and Depression in Individuals with Parkinsons Disease with and without Deep Brain Stimulation
The Parkinson Alliance Quality of Life Scale (PAQLS)
Comparing Quality of Life and Depression in Parkinsons 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 © 2020 The Parkinson Alliance. All rights reserved.

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