The "Golden Year" in Parkinson’s: Why Early Clinical Trial Participation Matters

After a Parkinson’s diagnosis, many people start their journey by learning about treatments to help ensure their best quality of life. But according to experts like Robert Hauser, MD, from the University of South Florida, a Parkinson’s Foundation Center of Excellence, the initial months after a diagnosis also hold a unique window of opportunity that may go unnoticed by people newly diagnosed with Parkinson’s and their care team. 

In Episode 108 of the Parkinson’s Foundation podcast Substantial Matters: Life & Science of Parkinson's, Dr. Hauser discusses the "golden year," a time prior to starting Parkinson’s medications. This window may hold a key to finding therapies that could change the course of PD. 

What is the “Golden Year”?

The "golden year" refers to the period of about 12 months after diagnosis when a person is more likely to have mild movement symptoms and may not yet need Parkinson’s medications to manage activities of daily life. 

Before starting medications to manage Parkinson’s symptoms, the brain is at its natural baseline. People who have not started medications are sometimes called treatment naïve. Being treatment naïve gives researchers a window to test disease-modifying therapies — treatments designed to slow, halt or possibly reverse Parkinson's progression. 

Timing Matters

Current Parkinson's medications manage movement symptoms such as stiffness and slowness of movement. However, they do not treat symptoms that may appear after many years, such as cognitive changes or serious balance issues. An important need in Parkinson's research is finding a way to diagnose the disease as early as possible and halt its progression before these long-term symptoms arise. 

For a clinical trial to test how a new treatment works, researchers must track changes in a person’s PD over time. Entering a trial before daily medication becomes necessary gives researchers the clearest picture of how well the new treatment works. This makes the "golden year" a unique opportunity for both researchers and people with PD.

Despite the importance of trials in the first year after a Parkinson’s diagnosis, finding eligible participants is a hurdle. It remains a challenge because of these factors: 

• Starting medication: Neurologists often start people with PD on medications right away, making treatment-free baseline observations unavailable.
• Wait times: Delays in scheduling appointments with movement disorder specialists can cause newly diagnosed people to miss early trial eligibility. 
• Awareness: Many health care professionals are unaware of clinical trials for newly diagnosed and treatment naïve people — or how important the golden year is to Parkinson’s research — and do not share trial information with people with PD.

What can we do?

To make the most of this critical time, collaboration is needed between people with Parkinson’s and their care teams:

• People with Parkinson’s and families: If you or a loved one is newly diagnosed and do not feel an immediate need for medication to manage daily activities, ask your PD doctor about clinical trial opportunities for treatment-naïve individuals.
• Healthcare providers: Doctors and care teams should discuss clinical trials with their newly diagnosed patients before prescribing PD medications. If symptoms are mild and manageable, allowing time to consider a trial can open doors to groundbreaking research. 
• Improving access: Some medical centers are working to improve systems to get newly diagnosed people into appointments quickly, so they can explore trial options before starting standard treatment. 

What’s Next

Every approved Parkinson’s treatment exists today because people chose to voluntarily participate in clinical research in the past. Raising awareness about research options helps to ensure newly diagnosed people know what's available and to decide if research participation is the right choice for them. 

Whether you are newly diagnosed or familiar with Parkinson’s, explore opportunities to get involved with PD research today. Explore current studies now.