Around the world, over 10 million people are living with Parkinson’s disease (PD). Within the U.S. alone, around 60,000 people are diagnosed with PD each year. While the disease affects everyone differently, there’s no doubt it can significantly impact the quality of life of those living with PD and their families.
If you’re part of the U.S. Parkinson’s community, how can you get involved in deepening the understanding of PD? In this article, we’ll cover the latest developments in Parkinson’s research and give you a rundown of projects you can join.
What Is Parkinson’s Research?
Parkinson’s disease was first described in 1817 as “shaking palsy.” At the time, little was known about it, and treatments were based merely on empirical observation. The earliest form of treatment was anticholinergic drugs, which were meant to help with the tremors but carried potentially adverse side effects like cognitive slowing and blurred vision.
Now, however, we have a wide range of therapies designed to improve the function and quality of life of people with PD, backed by a deeper understanding of the disease from numerous anatomical, biochemical, and physiological studies.
Researchers are continually searching for ways to develop and test new treatments in hopes of improving the quality of life of those with PD. Volunteering for research is a significant way to help these efforts. Yes, you can make a difference!
Why You Should Get Involved
Clinical trials are research studies that focus on evaluating the effects of medical, surgical, or behavioral interventions in people. They allow researchers to assess the safety and effectiveness of certain interventions and pinpoint possible complications or improvements.
Every treatment or medicine must undergo a clinical trial before doctors can prescribe them to patients. Clinical trials are integral to developing newer and better treatments, but 85% of trials face delays in the process, and 30% never even get started due to a lack of volunteers. Willing participants are essential for clinical trials; researchers need a diverse sample of people to study to confirm the validity of their results.
When you get diagnosed with Parkinson’s, joining a clinical trial is likely the furthest thing from your mind. However, your data could potentially accelerate breakthroughs in treatment that could affect millions of people worldwide. The idea of joining a study can be frightening, but simple participation doesn’t have to be scary, dangerous, or unpleasant.
Joining a study can give you access to the latest treatments and the advice of Parkinson’s experts. However, there are some risks to be mindful of, such as medication side effects. If you want to volunteer for a clinical trial, you need to weigh the potential risks and benefits. Give it the same care and thoughtfulness you would when considering a specific surgical procedure or starting a new medication for Parkinson’s symptoms.
Consult your doctor about the studies you want to join and whether they’re right for your situation. It might also be helpful to talk to your family, friends, or partner regarding your thoughts on research.
Anyone Can Get Involved
Some studies require recently-diagnosed participants who have yet to start medication. Others look for individuals with specific symptoms or complications or those who haven’t undergone certain treatments (like deep brain stimulation).
Even if you don’t have Parkinson’s, some studies require control groups who don’t have the disease. Genetic studies, in particular, seek close relatives of people with PD. Aside from that, supporting a loved one with PD while they’re participating in research (in ways like accompanying them to clinical sites) is also a valuable contribution.
Latest in Parkinson’s Research
Here is an overview of the latest in Parkinson’s research:
Improved Delivery of Dopaminergic Therapy
Levodopa is used widely for PD treatment, replacing dopamine, and improving motor symptoms (particularly stiffness and slowness). However, as the disease progresses, levodopa becomes less and less effective. Now, we have improvements such as:
- Rytary: This is a capsule with short-acting, medium-acting, and long-acting levodopa to make the effects last longer.
- Duopa: Duopa is a treatment designed to go directly to the gut, bypassing the stomach, so the absorption is much more efficient.
- Opicapone (just approved): This drug is meant to prevent levodopa from breaking down as fast as possible.
- Imbrija (just approved): An inhaled levodopa gets to the lungs quickly and increases dopamine levels in the blood faster. Some users report problems with coughing.
- KYNMOBI (sublingual apomorphine) (just approved): This is a medication to be taken under the tongue, which uses apomorphine instead of levodopa. It kicks in quicker but has a handful of side effects.
- Nourianz (just approved): This is a new type of drug that targets a different set of neurons to make their levodopa response last longer.
- Continuous apomorphine infusions (phase 3 trials ongoing): Designed to be injected under the skin via a pump, it keeps a stable level of apomorphine in the blood throughout the day and reduces time spent experiencing symptoms.
- Continuous levodopa therapy (phase 3 trials ongoing): This is similar to the continuous apomorphine infusions but with levodopa instead. Levodopa tends to be more effective compared to apomorphine.
Developing Disease-modifying Therapies
Many treatments for Parkinson’s today focus on mitigating symptoms instead of halting the progression of the disease. However, many research efforts are dedicated to figuring it out. The approach to developing disease-modifying therapies includes:
- Determining the molecular processes involved in disease progression
- Developing drugs that will interfere with these processes
- Modeling the processes that are involved in progression in animals to test new therapies
- Performing clinical trials in humans for the most promising agents
Promising Neuroprotective Treatments in Development
There are treatments designed to target the effects of Parkinson’s in the brain, such as:
- GLP-1 antagonists (phase 3 trials ongoing): This protects neurons in the brain by blocking inflammation. Some variants are already approved for conditions like type-2 diabetes and weight loss.
- α-Synuclein immunotherapies (phase 1 and 2 trials ongoing): This works similarly to a vaccine and blocks the spread of α-Synuclein and clear aggregated forms. The excess accumulation of α-Synuclein can clog up your neurons and disrupt the way they process signals, leading to Parkinson’s symptoms. A similar approach has been used for treating Alzheimer’s and has shown to slow the progression of the disease when given very early.
How To Get Involved in Research
Studies are always recruiting participants to help them learn more about the disease. Participation can also be surprisingly simple, with some clinical trials allowing you to submit data over the internet or use home testing kits. Take a look at some of these sites and see if any of them pique your interest:
The NIH’s trial finding tool is a great source of information on actively recruiting research trials throughout the United States. You can filter by disease and search by city name on the site to find Parkinson’s trials near you.
Parkinson’s Progression Markers Initiative (PPMI) is a landmark study that aims to identify biological markers of Parkinson’s risk, onset, and progression. It also provides the research community with a comprehensive data set and biosample library to speed up breakthroughs and enable validation toward clinical application of new findings. In addition, potential trial participants can search for a study site, and Parkinson’s researchers can access the study’s data to inform their own research.
The Michael J. Fox Foundation’s “Trial Finder” page is an online clinical study matching tool that allows potential study participants to find trials they qualify for. It is similar to the NIH’s trial finding tool.
The Michael J. Fox Foundation’s Fox Insight is an online clinical study that collects self-reported data to learn more about life with PD. Both people with Parkinson’s and people without the disease can participate by completing online questionnaires. Registration is required.
The PD Trial Tracker is an excellent source for general information on the current state of Parkinson’s trials, including an overview of active PD trials worldwide (with an interactive map for locating trials), an analysis of current trials, and more.
The Parkinson Study Group is a non-profit group of physicians and health care providers from the U.S., Canada, and Puerto Rico. They are experienced in the care of Parkinson’s patients and dedicated to clinical research of Parkinson’s disease. The PSG was formed in 1986 to help potential PD researchers get involved in research and trials.
PD GENEration: Mapping the Future of Parkinson’s Disease is a national initiative organized by the Parkinson’s Foundation. It offers genetic testing and counseling at no cost for people with PD. Participation can be either in-person at a participating site or from home through a telemedicine appointment with an at-home cheek swab collection kit.
The Latin American Research consortium on the GEnetics of Parkinson’s Disease (LARGE-PD) is a multicenter collaboration across Latin America aiming to increase PD knowledge in these countries. Latinos who are living with PD are invited to participate in this study. There are LARGE-PD sites in the U.S., Argentina, Brazil, Chile, Colombia, Costa Rica, Dominican Republic, Ecuador, Grenada, Honduras, Mexico, Peru, Puerto Rico, and Uruguay.
Next Steps & Online Resources
Advancements in Parkinson’s research are crucial for improving the lives of millions of people with Parkinson’s around the world. So whether you have Parkinson’s or want to support family, friends, or others with PD, you have an important role to play in the future of Parkinson’s research.
PCLA is dedicated to providing information on the latest in PD research with our “Let’s Talk Parkinson’s” live streams. Check out reports over the last two years from UCLA’s Jeff Bronstein, MD, Ph.D., who shared updates in 2021 and 2020. Register now for Dr. Bronstein’s 2022 update on July 28, 2022.
In the meantime, feel free to contact PCLA to get connected with support groups and events focused on improving the lives of those living with Parkinson’s Disease.