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.

Webinar: Spotlight On Clinical Trials

Here is an overview of the APDA webinar on Parkinson’s clinical trials, hosted on 9.17.21, including why clinical trials are vital to Parkinson’s research and how to participate.

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


Active Clinical Trials

PERSEVERE

PERSEVERE is a national study funded by the National Institutes of Health, led by Dr. Jori Fleisher at Rush University Medical Center in Chicago, IL, which is testing an educational program for family caregivers of people with Parkinson’s Disease with cognitive impairment, Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia. PERSEVERE will test whether a disease-specific, caregiver-centered educational intervention improves caregiver knowledge, confidence, strain, and health outcomes – and whether it helps people living with Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia, too.

Family caregivers will receive weekly educational guidance through a 12-week curriculum with resources and activities. All participation is virtual and scheduled when it works for you. There are no in-person visits and the person with Parkinson’s Disease, Dementia with Lewy Bodies, or Lewy Body Dementia does not participate—just caregivers. Caregivers fill out online surveys and assessments at baseline and every two weeks throughout their involvement in the study, including a six-month follow-up period after the 12-week curriculum.   

Interested in learning more? 
Visit https://redcap.link/PERSEVERE1 to watch a video providing more information about the study and hear testimonials from prior PERSEVERE study participants. 
Email persevere@rush.edu with questions.

Help spread the word!
Do you know someone who might be interested? Please share this research opportunity with your community. The PERSEVERE curriculum has been designed by and for caregivers across the caregiving journey, including those who were past caregivers.  

Curious to see if you are eligible? 
Complete the pre-screening survey at https://redcap.link/PERSEVERE1.


Rehabilitation of Airway Protection in Parkinson’s Disease:
Comparing In-Person and Telehealth Service Delivery Models

Are you interested in improving your swallowing and cough function? If yes, you may be eligible to participate in a research study!

WHO: Adults with Parkinson’s disease who have swallowing and cough difficulties. Ages 50 to 90.
WHAT: You will receive free evaluations and treatment of your cough and swallowing issues.
WHERE: Teachers College, Columbia University
TIME COMMITMENT: At least 5 in-person evaluations and 16 treatment visits over 15 months. Visits will be between 60-90 minutes.

Receive up to $200 for participation.

Click here for more information.


Exploring the interplay between patient activation, loneliness, and health behaviors, in people with Parkinson’s disease

This study, conducted by the School of Nursing at the University of Connecticut, is seeking individuals with Parkinson’s Disease to complete a survey investigating the relationship between patient activation, social connectedness, health behaviors, and quality of life. The survey will take approximately 15 minutes to complete, and you can conveniently access it online. Upon survey completion, you will have the opportunity to enter to win a $25 Amazon gift card.

Your participation will play a crucial role in shaping how healthcare providers support individuals with PD to lead fulfilling lives. By sharing your experiences, you can help us tailor nursing interventions and educational strategies to better meet the needs of PD patients. 

Click here for more info


Parkinson’s Disease Survey

The University of Nevada, Las Vegas researchers are seeking people who have Parkinson’s disease for a survey study on how Parkinson’s disease affects physical activity, habits,mood, thinking, and other behaviors. Responses from this survey will be used to help plan research studies for people with Parkinson’s disease.

Click here for more info

Link to the survey:
https://redcap.link/unlvpdsurvey


Speech Accessibility Project

Share your voice with the Speech Accessibility Project!
Now recruiting individuals with Parkinson’s to help speech recognition tools
understand diverse voices, including those affected by Parkinson’s and related
neurological diagnoses, for example, MSA, PSP, CBD, post-DBS, and LBD.
All personal information safeguarded at the University of Illinois Urbana-Champaign.
Project funded by Amazon, Apple, Google, Meta, and Microsoft.
Record your speech from the comfort of your home. Mentors from LSVT Global are
ready to help you through the participation process.
Get started today! Participants can earn up to $180. Caregivers can earn up to $90,
as well.
go.illinois.edu/SAPregistration


Perceptions of Voice Changes in Individuals with Parkinson’s

You are invited to participate in a research study on the Perceptions of Voice Alterations in Individuals with Parkinson’s Disease by Caregivers. This study, conducted by Rebeca Higareda from the STEINHARDT – Communicative Sciences & Disorders (CSD), aims to understand the caregiver experience.

Study Details:
Researcher: Rebeca Higareda, STEINHARDT – Communicative Sciences & Disorders (CSD), New York University

Faculty Sponsor: Professor Celia Stewart, STEINHARDT – Communicative Sciences & Disorders (CSD), New York University

Your Involvement:
Complete a 7-minute online questionnaire on demographics and caregiving background.
Answer questions about your experience as a caregiver to someone with Parkinson’s disease.

Benefits and Risks:
No known risks associated with participation.
While no direct benefits are provided, your input may contribute to understanding voice alterations in Parkinson’s patients.

Confidentiality:
Your research records will be strictly confidential.
Information may be used for future research, maintaining anonymity.

Voluntary Participation:
Participation is voluntary, and you can withdraw at any time without penalty.
Non-participation or withdrawal won’t impact services or grades at NYU.

Contact Information:
For study details or questions, contact Rebeca Higareda at rh3447@nyu.edu or 212-998-5230.
Faculty Sponsor: Celia Stewart – 212-998-5262, cs8@nyu.edu.

Rights as a Participant:
For rights-related queries, contact NYU Institutional Review Board at (212)998-4808 or ask.humansubjects@nyu.edu. Reference study # IRB-FY2024-8032.
You have received a copy of this consent document for your reference.

Link to survey:
https://nyu.qualtrics.com/jfe/form/SV_71lc2VfhlIg7sEK


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.


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.


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.

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.


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.


Learn more about Clinical Trials

Progress in treating Parkinson’s disease (PD) depends on clinical trials, and the success of clinical trials depends on people like you who volunteer to enroll in a trial. Download our brochure to learn about clinical trials, what they can offer you, and how you can learn more.

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