## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) - [Parkinson’s Outcomes Project](/advancing-research/our-research/parkinsons-outcomes-project) ## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) - [Parkinson’s Outcomes Project](/advancing-research/our-research/parkinsons-outcomes-project) # Key Findings ## 💡 Quick Summary - [The Parkinson’s Outcomes Project](/advancing-research/our-research/parkinsons-outcomes-project "Parkinson’s Outcomes Project"), one of the largest PD clinical studies with 13,000+ participants, showed that the type and quality of care people receive has a major impact on their symptoms, mobility and long-term health. - Study findings highlight crucial factors that shape outcomes — including[ exercise](/living-with-parkinsons/treatment/exercise "Exercise"), medication plans, caregiver support and managing coexisting conditions. - The project also identified best practices across expert care centers, revealing how approaches such as[ deep brain stimulation](/living-with-parkinsons/treatment/surgical-treatment-options/deep-brain-stimulation "Deep Brain Stimulation (DBS)") protocols, early prescribing strategies and regular physical activity can improve quality of life and guide future therapies. ![Microscope looking at a lock](/sites/default/files/styles/no_sizing/public/images/keyfindings.jpg?itok=UPSSphCN) Each person’s experience with Parkinson’s disease (PD) is unique. This makes it more difficult to run clinical trials and discover new and better treatments, because figuring out how to measure each person’s PD experience, so critical in clinical trials, has been a challenge for scientists to perfect. In 2008, Parkinson’s Foundation scientists began to wonder if the different care people with Parkinson's received impacted their PD experience. Launched in 2009, the Parkinson's Foundation Parkinson’s Outcomes Project discovered that differences in care dramatically impact the lives of people with PD. Now concluded, this study found valuable insights to improve the lives of people with PD today and to speed trials to deliver new and better therapies tomorrow. Among the largest clinical studies of Parkinson’s ever conducted, the Parkinson’s Outcomes Project spanned the patient experience of people with Parkinson’s. With more than 13,000 patients recruited through our [Global Care Network](/living-with-parkinsons/finding-care/global-care-network "Global Care Network")'s Centers of Excellence, the study included a dozen people with onset before 18 and more than 500 people who have lived with PD for more than 20 years (80% of whom live at home). How do [Center of Excellence](/living-with-parkinsons/finding-care/global-care-network "Global Care Network") care teams achieve the best results? Through this study, we tracked the components of the best care and learned about Parkinson’s in the process. ## Study Findings - ### Assessing deep brain stimulation surgery: which best practices result in better lives? Can we make [deep brain stimulation (DBS)](/living-with-parkinsons/treatment/surgical-treatment-options/deep-brain-stimulation "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.* - ### Higher Risk of Cognitive Impairment in PD with Diabetes 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](/understanding-parkinsons/non-movement-symptoms/cognitive "Cognitive Changes") 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-Induced Dyskinesia in PD Levodopa is the backbone of Parkinson’s treatment. However, people with more advanced Parkinson’s often develop [dyskinesia](/understanding-parkinsons/movement-symptoms/dyskinesia "Dyskinesia") — erratic, spontaneous movements — when they take their dose of levodopa. We set out to see if a medication called [amantadine](/living-with-parkinsons/treatment/prescription-medications/amantadine "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.* - ### Antipsychotic Medication and Survival Among People with PD 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.* - ### Injury Rates for People with PD Predicted by Parkinson’s Severity 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](/understanding-parkinsons/what-is-parkinsons/stages "Stages of Parkinson's"). 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.* - ### Simpler Prescribing Patterns Associated with a Lower Rate of Falls 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.* - ### Further Establishing Young-Onset PD Demographics Researchers used Parkinson’s Outcomes Project data to better define demographic and treatment patterns in the [young-onset Parkinson disease (YOPD)](/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons "Young-Onset Parkinson's") 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.* - ### Regular Exercise is Associated with Better Quality of Life and Mobility in People with PD 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.* - ### 2.5 Hours of Weekly Exercise is Associated with Slower Decline in Quality of Life In PD 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.* - ### Identifying Potential Best Practices for Treating Parkinson's: A Mixed Methods Approach 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.* - ### Gender Affects Caregiver Support 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. ## Related Materials Videos & Webinars ### [ Neuro Talk: Top Findings from the Parkinson’s Outcomes Project ](/library/videos/outcomes) [Watch Now](/library/videos/outcomes) Podcasts ### [ Episode 32: The Development of the Parkinson’s Outcomes Project ](/library/podcast/32) [Listen Now](/library/podcast/32) Videos & Webinars ### [ Neuro Talk: Research You Fund ](/library/videos/research-you-fund) [Watch Now](/library/videos/research-you-fund) ## Related Blog Posts ![Doctor holding hands with patient](/sites/default/files/styles/500x360/public/images/updatesfromfield-pop-blog.jpg?h=d1374c37&itok=0hIabxAi) Advancing Research ### [ Updates From the Field: Parkinson's Outcomes Project ](/blog/research/update-parkinsons-outcomes-project) READ NOW ![neurotalk-blog-jim](/sites/default/files/styles/500x360/public/images/neurotalk-blog-jim.jpg?h=8e7b635d&itok=ppJc-Tvr) Advancing Research ### [ Neuro Talk: Top Findings from the Parkinson’s Outcomes Project ](/blog/research/parkinsons-outcomes-project) READ NOW ![Woman stretching on a mat](/sites/default/files/styles/500x360/public/images/newexerciserecommendations-blog.png?h=ed9ce7df&itok=TJ4R-9-H) Raise Awareness ### [ New Exercise Recommendations for the Parkinson’s Community and Exercise Professionals ](/blog/awareness/exercise-recommendations) READ NOW - Share on Facebook - Share on X - Share on LinkedIn