Clinical Trial Participation

Parkinson’s Disease Clinical Trials

Clinical trials are a crucial step in discovering the causes, treatments, and a cure for Parkinson’s. Before drugs can be approved to be used in a patient population they are rigorously reviewed through the mechanism of a clinical trial.

APDA is pleased to maintain this area for your convenient access to basic information on research studies on-going at various movement disorder centers across the country. Although APDA has not individually reviewed or specifically endorsed each study posted here, each has been reviewed and approved by the Institutional Review Board at its respective medical center.

For further information on any study posted here, please utilize the specific contact information provided with the description of the actual study in which you are interested. As always, consult your physician to discuss the individual benefits and risks of each study prior to participating.

To increase your awareness and connect you with ongoing research and clinical trials visit:

• ClinicalTrials.gov
• Foxtrialfinder.com
• Parkinson-Study-Group.org
• NIH Clinical Trial Finder

Active Clinical Trials

Sharing data from neuroscience research studies – virtual interview or online survey

A team of researchers at Baylor College of Medicine (BCM) in Houston, TX are interested in hearing opinions from people like you who are connected to a patient advocacy organization like APDA. We are inviting you to participate in a virtual interview and/or online survey about what you think about sharing data from neuroscience research studies, even if you haven’t participated in one before. Your participation in this survey or interview is optional.

The 60-minute virtual interview and a 30-minute online survey are part of a larger study about neuroscience data and privacy. Your perspective will provide valuable insights for the responsible sharing of neuroscience data.

You will receive a $50 gift card for your participation (up to $100 maximum for participating in both activities).

Please click here to provide your contact information and some basic information about you and to connect to the survey and/or interview request.

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Wearable devices and Parkinson’s disease

Survey from the University of Washington
To advance the care of individuals with Parkinson’s Disease (PD), the University of Washington is conducting an anonymous online survey on the experiences and perceptions of individuals with PD on wearable devices (smart watches, fitness trackers, motion tracking medical devices, etc.) Individuals do not need to have any experience with these devices to participate. Any interested individual who wants to learn more or participate can go to https://sites.uw.edu/wearablesurveypd/.

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THE TOPAZ STUDY

Did you know?

Patients with Parkinson’s disease or another form of parkinsonism have a higher risk of breaking any bones and are 4 times more likely to have a hip fracture.

Help us find a solution.

The goal of the TOPAZ study is to help people with parkinsonism avoid fractures that can lead to loss of quality of life and physical independence. The TOPAZ study will test if an FDA-approved medicine called zoledronate can prevent fractures. Using zoledronate for this purpose is investigational.

What is involved?

This is a virtual study and can be done from the comfort of your own home. Vitamin D will be mailed to you and a nurse will visit you at home for a one-time intravenous (I.V.) infusion of zoledronate or a placebo.

You can join if you:

• Are 60 years or older
• Have not had a hip fracture
• Have been diagnosed with any of the following conditions:
  • Parkinson’s disease
  • Dementia with Lewy bodies
  • Multiple system atrophy
  • Progressive supranuclear palsy
  • Cortical basal degeneration
  • Vascular parkinsonism

To learn more, please visit TOPAZstudy.org, or call us at (415) 317-5748.

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SPARX3

Study in PD of Exercise (Dr. Daniel Corcos,PI)
Enrollment is now open.
A new Phase 3 multi-site clinical research trial from Northwestern Medicine will test if high-intensity treadmill exercise is effective in decreasing the signs of Parkinson’s disease in individuals who have not initiated medication for Parkinson’s. There are 29 sites (27 in U.S. and 2 in Canada) including Morehouse School of Medicine in Atlanta, GA, the first HBCU-based site. This study is funded by NINDS.

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LEOPARD-PD: Longitudinal Endpoint Optimization to Provide an Assessment of Relevant Drugs in Parkinson’s Disease

About the Study: The purpose of this study is to assess the ability of the Parkinson’s Disease-Health Index (PD-HI) survey to measure patient-relevant changes in disease burden over time. This study is being conducted by the University of Rochester Center for Health + Technology (CHeT) in partnership with the Michael J. Fox Foundation. This study will take place over the course of two years. If you decide to participate, you will complete various surveys at baseline, 6 months, 12 months, 18 months, and 24 months. At each time point, you will be asked to provide demographic information about yourself, answer questions about your Parkinson’s disease (PD) symptoms, any changes in health that you experience over time, and your preferences regarding the surveys administered throughout this study.

Who can participate: Individuals with a self-reported or clinical diagnosis of PD. Must be 18 years of age or older and speak English.

How to participate: Please click here to access the study information letter and baseline assessment. Please reach out to the study coordinator, Jamison Seabury, at jamison.seabury@chet.rochester.edu/ or 585.867.1461 if you have any questions.

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Rainbows of Aging

The Rainbows of Aging research team, led by Dr. Jason Flatt at the University of Nevada, Las Vegas, is recruiting LGBTQIA+ caregivers of people experiencing memory loss due to Alzheimer’s disease, Parkinson’s disease, or others causes of dementia, and LGBTQIA+ people experiencing these issues. This research is intended to learn about the needs and challenges of the LGBTQIA+ community and guide future efforts. 
There are three research opportunities:

1. Parkinson’s Research with Inclusion, Diversity, and Equity (“PRIDE”) focuses on understanding the health and health care needs of the LGBTQIA+ and non-LGBTQIA+ communities living with Parkinson’s disease.
   • What are they asking participants to do?
     They are asking people living with Parkinson’s and those who help with their care to complete a 45-minute survey over the phone. Participants receive a $25 electronic Visa card for completing the survey. Call  1-888-709-7689 to enroll or learn more.
2. Research Inclusion Supports Equity (“RISE”) – the first federally funded research registry for LGBTQIA+ individuals. The RISE research registry strives to create a network in research of Alzheimer’s disease and related dementias (such as from Parkinson’s disease) for the LGBTQIA+ community through community-focused, inclusive approaches to research engagement, recruitment, and support of caregivers and people living with memory loss. For more information please visit: https://www.theriseregistry.org/
   • What are they asking participants to do?
     Participate in a 45-75 minute focus group interview for which they will be compensated $25 for their time. Call 833-966-6974 for more information.
3. Stonewall Generations Study – This project is actively recruiting diverse LGBTQIA+ and non-LGBTQIA+ older adults aged 50+. This study will help them to better understand memory and thinking concerns, as well as health and social needs of the community.
   • What are they asking participants to do?
     Complete a ~45 minute phone interview with a member of the research team to receive $25 compensation. Call 833-966-6974 for more information.

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Staying Connected Through Communication Study

This study, conducted by University of Washington, is  seeking participants with Parkinson’s disease who have experienced changes in speech or voice to answer survey questions about their communication experiences. Your participation will help healthcare providers support people with PD and the important people in their lives to stay connected through communication. The surveys will take about 30-45 minutes to complete. You can complete the surveys online or they can mail you a paper copy.
They also require participants to have at least one family member, friend, or coworker to answer survey questions. They will complete SEPARATE surveys about their communication experiences. Their surveys will take 20-30 minutes. Data will NOT be shared between participating people.
Each participant will be mailed a $25 check upon survey completion. 

Click Begin Survey to participate: https://sites.uw.edu/speaclab/staying-connected-study/pd/
The person with Parkinson’s disease needs to start first and then nominate their family member or friend to participate.

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UC San Diego School of Medicine: Caregiver Study

UC San Diego is working on a national research project that is seeking participants caring for family members with Parkinson’s Disease, Alzheimer’s Disease, Lewy Body dementia, or any other type of dementia. This internet-based study aims to help address the stressors that come with being a caregiver and teach coping skills that may reduce that stress and/or improve emotional well-being. Study participants get access to specialized web-programs, monetary compensation, support calls and more. See flyer for more information. Contact 858-534-9479 for details and to see if you qualify.

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