Our current survey on Motor Symptoms and Perceived Well-Being in Parkinson’s Disease is now available. ALL individuals with PD are invited to participate. CLICK HERE TO BEGIN SURVEY.

Although greater insights about non-motor symptoms in Parkinson’s Disease (PD) have occurred over the last couple of decades, motor symptoms remain the diagnostic signature for PD. The cardinal signs of PD include: resting tremor, rigidity, bradykinesia (slow movement), postural instability (balance problems), and walking/gait problems. Although these symptoms in isolation or in combination are defining clinical PD symptoms, they can vary greatly from individual to individual – as it relates to how symptoms may be present and in terms of their intensity, frequency, and progression, and how the symptoms may impact quality of life.

Although there have been improvements in the management of motor symptoms, it remains of great importance to continue research focused on understanding the experience of motor symptoms through the eyes and voice of the person with PD so we can improve treatment approaches.  Further, it is important to assess the presence of motor symptoms within specific subgroups, including, but not limited to, tremor predominant subgroups and axial-rigid (stiffness and changes in coordination stability) predominant subgroups in relation to age and disease duration, and to evaluate the impact of these symptoms, whether individually or combined, on quality of life.

The data collection for this report will conclude on June 1, 2020.

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.

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