Top Key Findings of the Parkinson’s Outcomes Project [transcript] [audio]

Guests: Dr. Peter N. Schmidt, Ph.D and John Lehr

Presenter: Neal Howard

Guest Bio:

John L. Lehr, Chief Executive Officer

John L. Lehr brings to the Parkinson’s Foundation more than two decades of nonprofit fundraising and management experience, with a strong focus in the voluntary healthcare and medical research sectors. Before joining the foundation, John served as President of Orr Associates, Inc. (OAI), a consulting firm that serves the nonprofit sector. At OAI, John was responsible for daily operations of the firm, as well as management of leading clients including Georgetown University, MedStar Health and Special Olympics.

Peter N. Schmidt, Ph.D., Senior Vice President, Chief Research & Clinical Officer

Peter Schmidt, Ph.D., is Senior Vice President, Chief Research & Clinical Officer, at the Parkinson’s Foundation and oversees research, education and outreach initiatives. Dr. Schmidt leads the foundation’s Parkinson’s Outcomes Project, the largest clinical study ever conducted in Parkinson’s disease and is active in research in diverse clinical areas in Parkinson’s. He serves as an advisor to several government, industry and foundation initiatives, with the focus to set clinical standards. He is involved in several national-scale quality initiatives, including with the U.S. National Quality Forum and the Fresco Network in Italy. He serves on advisory committees for projects in wearable sensors, Huntington’s disease, Glut1 deficiency syndrome, cystic fibrosis, inpatient rehabilitation and telemedicine. His work has been covered widely in the press.

Segment Overview: Parkinson’s Foundation Clinical Officer Dr. Peter Schmidt and Chief Executive Officer John Lehr discuss the top key findings of the “Parkinson’s Outcomes Project” the largest clinical study of Parkinson’s disease in history.


Neal Howard: Hello and welcome to the program. I’m your host Neal Howard. Thank you for joining us here on Health Professional Radio. The Parkinson’s Foundation has announced the enrollment of the 10,000th Parkinson’s patient and the discovery of some critical new learnings in what represents the largest clinical study of Parkinson’s disease in history. Our guests today are Parkinson’s Foundation Clinical Officer, Dr. Peter Schmidt and Chief Executive Officer John Lehr. They’re joining us to discuss some of the key findings of the Parkinson’s outcome project, as I said the largest clinical study of Parkinson’s disease in history. Welcome to the program Dr. Schmidt and Mr. Lehr. How are you both?

John Lehr: I’m good.

Dr. Peter Schmidt: I’m doing well.

N: Dr. Schmidt, give our listeners a brief background about yourself.

S: I have a PhD in Applied Math which with work done in the simulation of clinical trials and about 9 years ago I was recruited by the foundation because of this study. They had come up with the idea of doing this study and they needed somebody who understood the mathematics of quality improvement which is a little bit different from a traditional clinical trial and more about understanding how things change continuously rather than looking for some new biological insights.

N: What was, maybe the major finding from the study and some more understanding into Parkinson’s?

S: In 2008, Atul Gawande wrote an article in The New Yorker where he talked about what we referred to The Bell Curve. The Bell Curve being the distribution of clinicians around a sort of average quality. He said we used to assume that physicians who all had the same training could all deliver about the same care. We now understand that that is not really true. That there are people differ in their ability to provide care for their patients and the outcomes they achieve in that. We were able to see, one of the earliest findings we were able to achieve with this was that, that exists in Parkinson’s too, that going to see an expert for clinician for Parkinson’s does not mean that everybody gets the same care. Each neurologist who specializes in Parkinson’s is able to achieve different results with their patients. Many people are great at managing cognition, many people specialize in falls or stability or addressing the fluctuations in medication. So each of them bring unique insight into their care. We launched this study to help bring those ideas that are achieved across our network of Centers of Excellence together and try and help everybody to effectively learn the great clinical insights that have been achieved at each Center.

N: As the physicians are giving this care and each one is giving a different level or quality of care as you suggest, was there any impact on the differing patients? The caregiver has 20 patients, each of them differing. How much patient difference was an influence on the care that was given by the physician?

S: Parkinson’s disease is often talked about as a snowflake disease. Everybody’s experienced the disease is different, but underlying it is always the same thing if you have Parkinson’s disease then you have a condition that responds to treatment with dopamine replacement therapy. Everybody with Parkinson’s has some sort of deficit in their dopamine system. But then their experience of the disease may be more impacted by loss of sleep, that may be more impacted by cognitive change. They may find it more difficult to keep up with a conversation or they may not. They may struggle with word finding or they may have the severe constipation or loss of olfaction, so people have all different experiences. The disease that are all sort of downstream effects of this central diagnostic criteria which is effective response to dopamine replacement. We know that they are only losing these dopamine-producing neurons in their brain but then the result of that can be different from person to person.

N: Mr. Lehr, give us a bit of background about yourself as well before we get back with Dr. Schmidt.

J: I have been in healthcare my entire professional life, initially as a fundraiser, for the last decade on the management side. Primarily in disease specific organizations that are trying to help people with those specific diseases live better lives and to invest in research that ultimately leads to a cure.

N: I understand that this study was launched back in 2009 and as a result Dr. Schmidt was brought on board. We’re talking 10,000 study cases here. How far reaching geographically is the study?

J: The Parkinson’s Foundation has a clinical Centers of Excellence network that includes 42 centers around the world. There’s a subset of those centers which are recruiting patients for the Parkinson’s outcomes project. The 10,000 individuals who are in the Parkinson’s outcomes project come from a subset of the Centers of Excellence. Those centers are spread throughout the United States. There are a few in Canada, Netherlands, Israel, Italy and we’re looking to expand the network so that we cover even more territory in the United States and beyond.

N: Dr. Schmidt, when it comes to the results of this study. What would you say physicians should pay more attention to?

S: When we started the study, we thought that what we were going to find was different approaches to medication to treat the fundamental symptoms of Parkinson’s disease, the slowness of movement and tremors and the fluctuations that people have their medication effects. But as we went forward with the study, we realized that there were sources of noise in the data set that we needed to address before we could really understand the basic management of the disease. Those sources of noise turned out to be from things like depression which affect a lot of people with Parkinson’s but it is not a huge impact on their life but is pretty prevalent across (crosstalk) a disease. Things like hospitalization where about a third of patients will have a loop, the hospital over the course of 3 years of follow-up, about a third patients will have an admission or more than one admission to the hospital. That often results in a dramatic change in their status. Many people struggle with hospital admissions because they may be immobile for a long period of time or they may have their medications changed when they’re admitted to the hospital, either their schedules or sometimes even what medications they’re taking to manage their Parkinson’s. Then the third thing that really stood out to us was psychosis, which affects a relatively small number of patients but when it affects them it really dramatically affects their lives. It is really a huge impact on their quality of life and the quality of life for their families. Those became three issues that we started to drill down on and look for findings about. Some of what we’ve found that we’ve looked for predictors of hospitalizations. Patients are more likely to go to hospital if they suffer a fall. We found evidence that very complex medication regimens predict hospital admissions. That may be because the medications are complex because the patients have complex disease or it may be that very complex medication regimens have side effects that impact hospitalizations and that’s something we need to look down, or to drill down to. When we look at depression, we found that the integration of a social worker into the care team can improve depression. It’s the strongest predictor of somebody going from a depressed state to undepressed. If you want people tend to get better, they’re more likely to get better if they have a social worker access to a social worker. That was another interesting finding for us. Then when we looked at psychosis, we found that patients really suffer with psychosis but that antipsychotic medications can be effective. We’ve looked at whether their ways that we can help clinicians to understand when psychosis is being caused by too much medication, which does happen or when it’s caused by changes in the disease in which case the patient should be started on antipsychotic treatment. Those are things as when we first thought that we were going to our initial findings and our key findings we’re going to be about changing approaches to dopamine replacement therapy, we then discovered that really there were these high-impact secondary issues that drove a lot of the experience of the disease and that we needed to address those first.

N: Where can we go online and learn some more about the Parkinson’s outcome project?

S: Our website is and on the website we cover all sorts of topics within the disease from basic information about Parkinson’s to under our research area. We talk about the Parkinson’s outcomes project and a lot of other research that we’ve supported. We support research into understanding the disease as well as optimizing its treatments. All of those have been really interesting areas for us and areas where we’ve helped move the field forward. For people who are interested and we get both patients and family members and also health care providers who call us on our helpline which is 1-800-4PD-INFO . That’s 1-800-(473-4636).
N: Pete, John I thank you both for speaking with us today. It’s been a pleasure and I’m hoping you’ll come back.

S: Absolutely. Thank you.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of the program are available at and also at You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and be sure and visit our affiliates page at and also at

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