I would like to wish you all a Happy and Healthy 2025! Last year, I focused mostly on trials that were published on the National Institutes of Health Clinical Trials website. For those of who have tried to find trials on this site, it can be very challenging and frustrating. Sometimes I can find just what I’m looking for, other times I have to start my search over several times. Click here to learn more.
Jen
If you are unfamiliar with Clinical Trials, this video explains the process:
What is a Clinical Research Study? The Michael J. Fox Foundation for Parkinson’s Research website guides you through the process of signing up for a clinical trial. Use the link provided below.
You are given many options in determining if a clinical trial is the right fit for you, including distance you are willing to travel and number of in-person visits required throughout the study. Be sure to read the inclusion and exclusion criteria! Fox Trial Finder | Parkinson’s Disease
Here is another from video PMD Alliance about navigating Clinicaltrials.gov, which will help you learn how to find the right trials for you.
Please let me know if there’s any specific drug, location or trial type that you’d like information on. I’m happy to get information to you or help you research the clinical trial site on your own. It’s not always easy to navigate. As much as I’m on there I sometimes forget to add one thing and I get all kinds of information that I simply don’t need. At the start of the new year, I am going to be focusing on some of the newer drugs that are beginning to recruit for upcoming trials and feature a few new medicines that have recently completed trials and been approved.
Jennifer Heath 310-428-8063 jenheathbar@gmail.com
PD Trials of Interest:
December, 2024
As we near the end of 2024, I thought it would a good time to share a variety of exercise related research trials for those of you with New Year’s Resolutions! Hopefully, these will start in time to help start 2025 off with new exercise challenges! These are the current ones in the United States that are recruiting. There are several more that will be recruiting soon, hopefully.
If you live in the Las Vegas area, enjoy walking outdoors, are interested in learning Nordic Walking and meeting others in your community with Parkinson’s Disease, this UNLV sponsored research study is worth your consideration.
Participation Criteria:
- Diagnosed with Parkinson’s Disease
- The ability to walk independently with or without the use of a cane, walker, or walking poles
- Must attend a pretrial assessment at UNLV, Department of Neurology GAIT Lab
- Must agree to participate in at least 1 session each week for 6 months at a local park.
If you qualify for this research study, you will receive
- A step counter
- A pair of Nordic Poles
- A bucket hat
Link to Nordic Walking Trial
Interval Training and Parkinson’s Disease
Coral Gables
University of Florida
The study will compare the impact of high intensity, interval, training and high velocity circuit resistance, training on heart rate, variability, gait, and functional performance. The study is currently enrolling 40 patients who have been diagnosed with Parkinson’s. Exclusions from this trial include cardiovascular disease, pacemaker, immunodeficiency syndrome, HIV, any other neuromuscular diseases, besides Parkinson’s and a current muscular skeletal injury. There will be two groups. One group will participate in high velocity circuit resistance training in person two times a week for 10 weeks. The second group will participate in high intensity interval training for two days a week for 10 weeks. The study will measure changes in the heart variability rate, 6 minute walk test, sit to stand test, ten meter walk test, heart rate recovery, neuromuscular strength, and stance time, double support time, and swing time of gait. There will be a pre-and post test measuring each of these. This seems like it will be challenging!
Click on the link below for all contact info and details.
A Multimodal Exercise Program With Gamification for Parkinson’s Disease (MEP+G)
CSUN Ventura, CA
Contact Emily Griffin, DPT
803-339-9718
agriffin@equilibrium-bpc.com
This 10 week in-person study will include a group who participates in non-contact boxing sessions that include cardio, strength, and balance for 1 hour, 3 times weekly with a certified RSB coach. You will be required to provide medical clearance from your PCP or neurologist. Exclusions include anyone with DBS within the past three months, currently a participant in Rock Steady Boxing or a similar type of exercise more than 60 minutes weekly. All participants are required to wear a heart rate monitor as your heart rate will be measured throughout sessions. There are also pre-and post assessments. This one has lots of details. Please click on the link below.
Genetics and Aerobic Exercise to slow Parkinson’s (GEAR). Cleveland, Ohio At the Cleveland Clinic sponsored by Jay Alberts
Contacts:
Elizabeth Jansen 216-780-9160
Anson Rosenfeldt 216-644-7617
Inclusion criteria includes the ability to mount and dismount a stationary bike, a smart phone device for activity monitoring, and on a stable dose of meds.
Exclusion criteria includes current participation in clinical trial that is disease modifying, dementia, or any other neurocognitive impairment, DBS or focused ultrasound, a musculoskeletal issue that would limit the ability to cycle.
This in-person trial includes high intensity, cycling three times a week for 12 months with a 40 minute session, including a 5 minute warm-up and a 5 minute cool down. This one also has lots of details. Please click on the link below for all relevant info.
Vibrotactile Gloves
For those of you who have been waiting for information on when the Stanford Glove Trial will begin, This trial looks as though it is using the exact same gloves, but it is based in Eugene Oregon.
They are currently recruiting 30 patients for their trial in which each participant will wear Vibrotactile Coordinated Reset gloves for a total of four hours each day. Each patient will receive the real gloves for two months and placebo gloves for two months. Click on the link for all the details.
Link to glove trial:
November 2024
This is a great opportunity to get involved with Parkinson’s research. And get paid for it!
Sign up to participate in Rare Patient Voice here. Once you have signed up, you will receive the link for this study and others.
EXCEL-PD
UCSF researcher are seeking volunteers to participate in a clinical trial to learn about the effects of exercise on cognition and biological markers in Parkinson’s Disease.
To learn more, please contact the research team:
Principal Investigator: Nijee Luthra, MD PhD Research Coordinator: Corinna Conroy Phone: (415) 502-2960; Email: movetrials@ucsf.edu
PERSEVERE
We are excited to share information about a new research study specifically designed to support caregivers, which is now open for enrollment!
PERSEVERE is a national study funded by the National Institutes of Health 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.
August 2024
AUGUST 2024
- Clinical Trials Corner
- PD Trials of Interest
I apologize for the length of time it took me to provide information on new clinical trials. I went through a stretch of apathy that lasted for several weeks, and I could not get my brain to focus on anything. I am finally feeling more like myself, and my brain is craving knowledge, so here are a few upcoming trials you may want to check out.
Please let me know if you have any questions or would like more info.
310 428-8063
CEREVEL THERAPEUTICS:TAVAPADON
Tavapadon is a selective D1/D5 partial agonist that is being researched as a once daily medicine that can be used alone or in conjunction with Levodopa. It selectively activates the D1/D5 receptors with the potential to provide the right balance of safety, tolerability, and motor control in PWP. In addition, it will bypass the overstimulation of the D2/D3 receptors which is believed to be the cause of side effects of currently used dopamine agonists. The Phase 3 Trial of 524 participants, TEMPO-3, indicated that participants had a significant increase in on-time without developing dyskinesia over a 27 week trial. More results will be released later this year. Cerevel is currently recruiting for a TEMPO-4 trial to determine long-term safety and tolerability. They are seeking 1,200 participants for a 58 week trial at over 100 locations around the world. Below is the link to the site. https://clinicaltrials.gov/study/NCT047607
BLUE ROCK THERAPEUTICS: BRT-DAD1
It seems that stem cell studies always weave their way back into the discussion of possibly improving or curing a variety of diseases. The FDA recently granted the Regenerative Medicine Advanced Therapy designation to Blue Rock Therapeutics’ bemdaneprocel(BRT-DAD1) , an investigational cell therapy for PD. The purpose of BRT-DAD1, which are derived from pluripotent (human embryonic) stem cells is to replace the dopamine producing neurons that have been lost to PD.
Their Phase 1 trial included 12 patients whom each received 1 of 2 different doses of BRT-DAD1. The cells were surgically implanted into the brain of each participant with the expectation that they will reform neural pathways and improve motor and non-motor symptoms. After 1 year each participant received immunosuppression therapy, and assessments were made to determine safety, tolerability,the feasibility of transportation, evidence of cell survival, and motor effects. These assessments were repeated at 18 months and it was concluded that BRT-DAD1 was well tolerated with no major safety issues, and Assessa F-DOPA-PET scan showed that the cells survive and engraft in the brain. Assessments will be given again at the 2 year mark.
Based on these results, BlueRock is planning a Phase II Trial for later this year.
FOR LOS ANGELES AREA PEOPLE
The USC Department of Physical Therapy is seeking participants to get paid $100.00 per session for 2 sessions to play video games while having your brain measured by Transcranial Magnetic Stimulation. The purpose of this study is to determine if other areas of the brain can reduce the effects of PD and help PWP learn new movements. If interested, contact Pooja at 312 792-0632.
Also, the light therapy trial that I shared in April is still seeking participants. It does require a 180 day commitment with 1 dedicated hour each evening. I am currently participating, so feel free to reach out if you have any questions. Below is the link.
https://celestepd.squarespace.com/ apply
April 2024
LIGHT–PD
The University of Rochester and Dr. Ray Dorsey have an interesting new clinical trial in which you participate from the comfort of your own home, doesn’t involve changes to your current meds, and you can earn $500.00! All interactions with the medical team will be via Zoom and phone.
This is a 7 month trial that involves the use of a device that emits a specialized light therapy to determine whether or not it provides a positive impact on both motor and non- motor symptoms.
Requirements:
*45 years or older
*Have been taking Parkinson’s medicine for at least 1 year
*Dosage must be stable the month before starting the study
*No changes to medication throughout the study *Your doctor may deny your eligibility if it is determined that severe dyskinesia or off time problems may interfere with results.
Click on the link below
https://celestepd.squarespace.com/ apply
The University of Rochester is building a computer system that allows anyone from anywhere in the world to perform standard Parkinson’s tests by modulating facial expressions, speech, or gestures, using a computer browser and receiving an automated assessment on Parkinson’s symptoms. They are seeking individuals with and without Parkinson’s Disease to take part in a research study to determine the best possible way of sharing both the screening and symptoms progression information with individuals after conducting a set of tasks.
If you participate, you will be asked to go through a website where you perform speech and motor tasks in front of a webcam, and then provide your feedback on the website. Study participation takes about 30 minutes.
Study participation is limited to individuals who speak English and reside outside of the European Union. You will receive an Amazon gift card ($15) after you complete the program if you choose to accept it.
If you are interested and have not completed the study before, please complete this form and a study team member will contact you: https://redcap.link/PDfeedbac
LUMA 201
This is an investigational, double-blind study evaluating the safety and efficacy of a drug to determine if it can delay the progression of Parkinson’s Disease in individuals who have not yet started taking medication. This drug in this study is an LRRK2 inhibitor. It works slowing down or inhibiting the production and build-up of a protein that is believed to cause damage to cells that results in the development of symptoms associated with PD.
Participation Criteria:
*received a Parkinson’s diagnosis within the last 2 years
*have never been treated with Parkinson’s medication
*between 30 and 80 years old
Click here for more information
March 2024
SPARX3
The SPARX3 clinical trial is a great one if you have been diagnosed with PD, have not yet started on medicine, and love to exercise! There are 24 sites throughout the US that have opportunities for participants.
- https://www.sparx3pd.com
- Volunteers must be:
- 40-80 years old
- Diagnosed with PD within the last 3 years
- Not yet taking medications for PD symptoms
- Not planning to start medications for PD symptoms in the next 6 months
- Not currently participating in a structured exercise program
- Available to take part in a regular treadmill exercise program 4x/week for 18 months in study visits periodically for 24 months
- Comfortable with physical and cognitive assessments, blood draws, and Imaging scans (DaTscan) at the start and end of the study
Lenrispodun
Lenrispodun is an adjunctive therapy for patients experiencing motor fluctuations.
This is a Phase 2 double-blind, placebo, fixed dose trial that will last approximately 9 weeks,
which includes a 4 week window in which participants will take either Lenrispodun or a placebo.
This trial is designed for Parkinson’s patients who initially had positive results while taking levodopa, but are now experiencing dyskinesia and/or off times. This trial is ongoing at 28 locations throughout the USA.
Link:ITCIClinicalTrials@itci-inc.com
Phone Number: 646-440-9333
TOPAZ Trial
You are invited to participate in a research study for the Prevention of Fractures in Patients with Parkinson’s Disease and Parkinsonism.
Online Studies
My MovesMatter.
This study is based on an app developed by one of our Twitchy Women, Richelle Flanagan from Ireland. Richelle is collaborating with the Department of Anatomy and Neuroscience, School of Medicine at University College Cork on this.trial, “Tracking Parkinson’s Disease Symptoms, Medications, and Menstruation”. It is currently only available for women living in Europe, however, anyone can download the app. The app is user friendly, and helps you track PD symptoms, medicine, exercise, and your menstrual cycle. This is an excellent way to keep track of the information you need for appointments with your neurologist, as well as Primary Care doctor and OBGYN. Click on the link below for more information about this study and instructions for downloading the app.
On-line for the NIH National Institute of Neurological Disorders and Stroke
This is not a trial, but a survey for the NIH, in collaboration with Mass General Brigham, which consists of 3 short answer questions seeking the perspectives of PWP, caregivers, and family/friends to identify experiences with pre clinical trial challenges. The purpose is to obtain information to assist in eliminating some of the things that impede the length of time it takes in all phases of clinical trials. The opinions we provide will be added to information collected from academic researchers and funders of trials and research. The questions require some time and thought, but this is a great way to assist in making the clinical trial process more efficient.
Fox Foundation Trials Seeking Participants
Oral Medication to Stop Parkinson’s Disease Progression: Researchers at Inhibikase Therapeutics are testing whether a new oral drug, Risvodetinib (IkT-148009), can slow or stop the progression of Parkinson’s disease, by partially or completely restoring lost functions. The study is seeking volunteers between 30 to 80 years of age who have not received treatment related to PD in the past. Learn more about eligibility and join the study.
Understanding the Effects of a Treatment for Early Parkinson’s Disease: Roche is evaluating a novel drug, RO7486967, to see if it’s safe and well tolerated for users. The primary goal of the new drug is to treat people in the early stages of Parkinson’s disease. Researchers of this study will be looking at the potential side effects and participants’ self-reported experience with the drug. With 15 study centers available in the United States, the study is recruiting volunteers diagnosed with the disease within the last three to five years. Learn more about eligibility
Online
This is one you can do from home using your computer or smartphone every 3 months.
https://www.michaeljfox.org/ppmi
In-person at 18 locations in the USA
STEM-Parkinson’s Disease
This is a double-blinded, controlled, randomized clinical trial (RCT) to establish the safety and efficacy of a non-invasive neuromodulation device for treating symptoms associated with Parkinson’s disease.
Winter Workouts
Are you experiencing the winter blues and struggling to find the motivation to exercise?
Power Moves are a great exercise for PWP. Try the workouts below.
Standing Parkinson’s Strength and Balance Exercises for Stamina and Endurance with Polly Caprio
Brain & Body Workout for Improved Parkinson’s Symptoms
If you need assistance, you may email Jen Heath at jenheathbar@gmail.com.
I would be happy to assist you.
You must be logged in to post a comment.