Foundation Team Joins Experts in Vancouver to Share Advances in Research and Care

Earlier this month, members of the Parkinson’s Foundation team joined thousands of movement disorder specialists in Vancouver.

They were on site for the International Congress of Parkinson’s Disease and Movement Disorders, which brings together neurologists with expertise in Parkinson’s and similar diseases to share advances in research and care. During the congress, our team shared four posters highlighting Parkinson’s Foundation innovations.

Parkinson’s Foundation Posters: MDS Congress 2017

Patient Engagement in Parkinson’s Research: A Comparison of Attitudes and Impact in the UK and the US
Team members: Megan Feeney, M.P.H., Veronica Todaro, M.P.H., Emily Sanders and Karlin Schroeder, M.A. in collaboration with Claire Nolan, Ph.D., of Parkinson’s UK

We know that research can be more effective when scientists and patients collaborate. But what do researchers think? The Parkinson’s Foundation and Parkinson’s UK surveyed 100 researchers to find out. The results? Researchers report that patients have played a role in developing and designing studies in the US and UK. Researchers and study sponsors in both countries agreed that working with patients made research better, but they differed in the ways in which it improved their work. For example, study sponsors in the US tended to report that patients improved study design, while those in the UK tended to report patients validated research questions. Researchers in both countries also agreed that time was their biggest barrier to engaging patients in their work. The two nonprofits will use the outcomes to advance patient engagement moving forward.
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Improving Clinical Trials Through Patient Input: Outcomes of a Partnership Between Pfizer and Parkinson’s Disease Foundation
Team members: Karlin Schroeder, M.A., Megan Feeney, M.P.H., and Veronica Todaro, M.P.H., Parkinson’s Foundation, in collaboration with David Gray, Tim Rolph and Shivraj Sohur of Pfizer, Inc.

How can people with Parkinson’s collaborate with pharmaceutical companies to improve drug development? Seven Parkinson’s Foundation Research Advocates attended a one-day patient panel at Pfizer to find out. They provided overall insights on their experience with Parkinson’s and barriers that might prevent them from participating in clinical trials. They also reviewed one of the company’s active clinical studies that is studying a new Parkinson’s drug, and provided ideas as to how the company could improve the trial to better meet patient needs. Afterwards the Parkinson’s Foundation and our Research Advocates made eight recommendations. For example, Research Advocates suggested that the company could better measure patient-reported outcomes (how patients report that the drug impacts their lives). While all eight were implemented, three directly impacted the study design. Pfizer staff viewed this interaction as an efficient and effective way to increase the voice of the patient in trial design.
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Higher Risk of Cognitive Impairment In Parkinson’s Disease With Diabetes
Team members: Peter Schmidt, Ph.D., Fernando Cubillos, M.D., Kelly Lyons, Ph.D., Connie Marras, M.D., Ph.D., Thomas Davis, M.D., Eugene C. Nelson, D.Sc., and Michael S. Okun, M.D., in collaboration with the Parkinson’s Foundation and Centers of Excellence

Are people who live with both Parkinson’s and diabetes at a higher risk of developing cognitive impairment? Researchers looked for answers using data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s. Researchers studied 2,000 individuals who were seen at a Parkinson’s Foundation Center of Excellence. They looked at two groups, participants living with PD and diabetes and those with Parkinson’s only. Using data from center visits over time, researchers analyzed age and body mass index of all participants, as well as cognition, mobility, falls, hospitalizations and caregiver strain. When comparing the groups, they found that people with PD and diabetes experienced significantly worse cognition than the group without diabetes. When people lived with other chronic conditions alongside Parkinson’s — such as arthritis, cancer and other neurological conditions — those conditions impact cognition. But they did negatively impact quality of life, mobility and hospitalization rates.  Overall, the study found that the risk of cognitive change in people with Parkinson’s and diabetes is about 50 percent higher than the risk of cognitive change than in people with PD without diabetes.
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Assessing Deep Brain Stimulation Surgery: Which Best Practices Result in Better Lives?
Peter Schmidt, Ph.D., Fernando Cubillos, M.D., Clarissa Martinez-Rubio, Ph.D., Kelly Lyons, Ph.D., Connie Marras, M.D, Ph.D., Thomas Davis, M.D., Eugene C. Nelson, D.Sc., and Michael S. Okun, M.D., in collaboration with the Parkinson’s Foundation and Centers of Excellence.

Can we make deep brain stimulation (DBS) surgery more effective for people with Parkinson’s? At the Parkinson’s Foundation, we are using Parkinson’s Outcomes Project data to determine how and why surgery results vary. Additionally, we plan to use that knowledge to spur improvements in DBS.

Researchers studied 460 participants before and after undergoing DBS surgery — more than 250 of whom receive care across 10 Parkinson’s Foundation Centers of Excellence. While DBS patients at most centers experienced a modest improvement in their PD symptoms after surgery, patients at one center in particular had superior results than all others. When we tried to find out why, there were several crucial factors: this center followed a strict selection of patients who experienced “on-off” fluctuations and avoided surgery on patients with heart conditions. However, such factors don’t explain the improvements entirely: most likely, the surgeon’s skill and DBS programming software after surgery were also factors.

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 Parkinson’s Foundation Center of Excellence network to improve DBS surgery outcomes. Creating new protocols like this one can help make life better for people with PD.
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