Key Findings

Can we make deep brain stimulation (DBS) surgery more effective for people with PD? Researchers studied 460 participants before and after undergoing DBS surgery — more than 250 of whom received care across 10 Parkinson’s Foundation Centers of Excellence.

While those who underwent DBS at most centers experienced a modest improvement in their Parkinson's symptoms after surgery, people with PD at one center experienced superior results over the others. Using this center as a model, the Parkinson’s Foundation will analyze its DBS protocols and use the findings to create a process that identifies patients most likely to benefit from DBS. Once we determine why the surgery or programming is better at this center, we hope to create a new DBS protocol that could be shared across the Center of Excellence network to improve overall DBS surgery outcomes. Creating new protocols like this one can help make life better for people with Parkinson’s.

Presented at the International Parkinson and Movement Disorders Society Congress in 2017.

Researchers studied 2,000 people with PD who were seen at a Center of Excellence. They looked at two groups, participants living with PD and diabetes and those with Parkinson’s only. When comparing the groups, they found that people with PD and diabetes experienced significantly worse cognition than the group without diabetes. While people who live with PD and other chronic conditions — such as arthritis, cancer and other neurological conditions — did not experience cognitive decline, they faced quality of life and mobility challenges and increased hospitalization rates.

This is important because researchers are starting to explore whether there are any links between cognitive change in Parkinson’s and cognitive change in diabetes. Our research confirms that the two diseases combine to result in higher risk of cognitive change. Diabetes drugs are being tested to see if they might have an impact in Parkinson’s.

Presented at the International Parkinson and Movement Disorders Society Congress in 2017.

Levodopa is the backbone of Parkinson’s treatment. However, people with more advanced Parkinson’s often develop dyskinesia — erratic, spontaneous movements — when they take their dose of levodopa. We set out to see if a medication called amantadine is effective at reducing dyskinesia.

The study showed that with expert PD care, amantadine should be considered to treat dyskinesia. Further, the association between reduction in dyskinesia, use of amantadine and treatment of mental health problems are important topics for further studies.

Presented at the World Parkinson’s Congress in 2016.

According to study data, those with Parkinson's disease who take antipsychotic medications have a higher mortality rate. The use of dopamine-blocking antipsychotic medications has been implicated in the death of people with PD, however there was not enough data on mortality associated with the correct use of antipsychotic medications in expert Parkinson's care.

This study analyzed people with PD who take antipsychotic medications versus similar patients not treated with antipsychotics. Findings showed those who take antipsychotic medication have an initial elevated risk of mortality, but there is no significant risk once the person takes the medication for more than three years. The research suggests that doctors treating people with PD experiencing psychotic symptoms should refer to an expert clinician and take caution to avoid contraindicated medications during transitions in care.

Presented at the World Parkinson’s Congress in 2016.

This study researched falls among people with Parkinson's. The research proved that the rate of injury increases with Parkinson’s severity independently of a person’s age or PD stage. The study showed that those with the highest fall risk are men with rapid rate of progression and a comorbidity (another health issue associated with PD).

Presented at the World Parkinson’s Congress in 2016.

In this study, researchers tracked the medications taken by people with PD — all of whom received expert care at a Parkinson’s Foundation Center of Excellence — and outcomes. The study not only identified the top 10 medication patterns that prove to be the most efficient for treating PD, but it also identified that the Center of Excellence that reported the lowest falls also treated patients with the simplest Parkinson's medication combinations.

The Parkinson’s Foundation continues to analyze current data in hopes of creating a standardized approach to care, more specifically, medication, that can improve the lives of people with PD.

Presented at the World Parkinson’s Congress in 2016.

Researchers used Parkinson’s Outcomes Project data to better define demographic and treatment patterns in the young-onset Parkinson disease (YOPD) population. These demographics include:

• People with YOPD over time had better cognition than those with typical-age of onset for similar disease duration.
• Unlike some previous reports, the risk of falls and caregiver strain were correlated with duration of Parkinson’s, rather than with age of onset.
• Given the large number of long-duration of people with YOPD, the risk of falls and caregiver strain are both concerns.
• There is a significantly higher male proportion in the YOPD group. This finding has not been reported in prior studies.

Presented at the International Parkinson and Movement Disorders Society Congress in 2016.

This study examined the associations between exercise and change in quality of life and mobility over two years. The study compared those who exercise and those who did not.

Improved mobility and a better quality of life were seen in those who:

• Consistently exercised
• Started exercising after their first center visit

Presented at the International Parkinson and Movement Disorders Society Congress in 2016.

This study tracked 2,940 people with Parkinson's over two years and found that those who exercised at least 2.5 hours per week are associated with better health-related quality of life and slower decline.

Presented at the International Parkinson and Movement Disorders Society Congress in 2015.

Researchers used Parkinson’s Outcomes Project data to better identify specific care approaches associated with better outcomes across people who seek expert care at a Center of Excellence. Best practices included:

• Early referral to physical therapy
• Encouragement of exercise as part of treatment
• Availability of a psychiatrist on the team
• Communication with patients in between visits
• Focus on early patient and care partner education

The study concluded that patients at some centers see superior outcomes. Studying these centers, the foundation can test best practices and turn them into evidence-based care recommendations that can help the entire PD health professional community, making life better for people with Parkinson’s.

In 2015, the Parkinson’s Foundation shared these findings at the American Academy of Neurology and presented them at the 2015 International Parkinson and Movement Disorders Society Congress.

For the study, the Foundation analyzed data on more than 7,000 men and women receiving care across our Centers of Excellence network. They looked at whether people with PD were accompanied by a care partner for a doctor’s visit and at the relationship between the caregiver and person with PD. Study findings include:

• Compared with women, men were significantly more likely to have a regular care partner (88.3% versus 80.1%), and less likely to have a paid caregiver when they first enrolled in the study (2.2% versus 4.9%).
• Women were 26% less likely to have a care partner accompany them to a regular doctor’s visit. And women were using a paid caregiver at a faster rate than men, which is significant because research suggests that health-related quality of life declines when a family caregiver is replaced by a paid caregiver.

Caregiving is harder on women than men (20.2% versus 16.9%, respectively, as measured on the Multidimensional Caregiving Strain Index), even after adjusting for potential confounders.