Parkinsons outcomes Project: Report to the Community

Find Answers. Change Lives. Beat Parkinsons.

The Parkinsons Outcomes Project The mission of the Parkinsons Outcomes Project is to determine what works best in treatment and care with an aim toward slowing the impact of the disease. At its heart is an all-inclusive, international database that will follow patients over time. Currently tracking more than 5,500 patients in four countries, the Quality Improvement Initiative (QII) study will grow in the coming years to follow tens of thousands of patients worldwide. The Project will: Fund comparative research to determine best treatments and why some people respond better to some therapies than others; Create transparency about what strategies produce the best results and how specific centers measure up; Allow individuals to compare their health and treatments to that of similar people; and Inform education and outreach efforts for both families and professionals.

To Our Parkinsons Community:

A little over three years ago, the National Parkinson Foundation (NPF) launched an unprecedented research collaboration: the Quality Improvement Initiative (QII), part of the Parkinsons Outcomes Project. It is the largest clinical study of Parkinsons disease ever conducted, and the first with the primary goal of identifying and explaining factors that result in longer, better, and more active lives for people with Parkinsons. The result is the deepest pool of Parkinsons data ever collected, from some 5,500 people in four countries. If you have Parkinsons, there is almost certainly someone like you participating in the study. Some are thriving; others are not doing as well. Our goal is to determine what makes that difference. We can now consider the interplay of factors that produce different results in different people, and likely paths toward better outcomes. Unlike prior studies, this initiative encompasses the entire spectrum of Parkinsons disease. No one was too sick or too advanced, or too young or too old, to be included. More than 1,400 participants are now between 55 and 65 years old, the ages when most people are diagnosed. But participants also include more than 440 with onset before age 40, and more than 100 with onset after age 80, making it the largest prospective study of both young- and late-onset Parkinsons ever conducted. Our study is equally inclusive in terms of the experience of individuals with Parkinsons. More than 650 participants manage at least two other serious illnessesa group almost always excluded from other clinical studies. Our data includes an assessment of medications and other treatment, as well as motor symptoms, cognition, anxiety and depression, and caregiver burden.

We now have the

deepest pool of Parkinsons data ever collected. If you have Parkinsons, there is almost certainly someone like you participating in the study.

n at i o n a l Pa r k i n s o n f o u n dat i o n

This comprehensive evaluation reflects the complicated nature of Parkinsons, which over time can affect nearly every part of a person, as well as their loved ones. Our study encompasses individuals at 20 leading centers for treating Parkinsons, all part of NPFs Center of Excellence network. By studying the best of the best, NPF plans to delve into the key differences in treatment and outcomes because every person with Parkinsons deserves best practice care, no matter where they are treated.
John Nutt, MD

When we study how disease affects individuals, we talk about your health status, and much of this report concerns the health status of people in our study. Health status is important because it encompasses much more than just the disease. Our goal as physicians is to not just help you function better, but to help you feel better. There is a difference between function and feeling, and we have found that how people with Parkinsons feeltheir mood and depressionis a critical factor with a tangible impact on overall health. We have also identified some of the steps that we as doctors, and you as patients, can take to change this. These opportunities for all of us to improve health are the highlight of this inaugural report.
Mark Guttman, MD

We all hope that the next major breakthrough in Parkinsons disease will be a treatment that slows down biological progression. When we achieve this, optimizing care will be even more important: though symptoms may be reduced, they must be addressed over a longer life expectancy. We will still need to work together to prevent falls, treat depression, and address

n at i o n a l Pa r k i n s o n f o u n dat i o n

other factors that can speed the deterioration in your health status. As breakthroughs are achieved, care will become more personalized, so that the best therapies are applied to your particular genetic and environmental factors. In short: our goal is not only to optimize todays care, but to help guide tomorrows. On behalf of NPF and our affiliated centers and institutions, we express our gratitude to those who have shared our vision and supported our efforts. In particular, we thank the patients, caregivers, clinicians, and researchers whose participation is steadily filling gaps in our understanding, and supporting a brighter future in the fight against Parkinsons. We look forward to future reports to you, the Parkinsons community, on our progress.
Tanya Simuni, MD

John Nutt, MD Director of the NPF Center of Excellence Movement Disorders Center at Oregon Health and Science University, Portland, OR QII Study Co-Chair

Tanya Simuni, MD Director of the NPF Center of Excellence Parkinsons Disease and Movement Disorders Center at Northwestern University, Chicago, IL QII Study Co-Chair
Eugene Nelson, DSc

Mark Guttman, MD Director of the NPF Center of Excellence Center for Movement Disorders in Markham Ontario, Toronto, Canada QII Study Co-Chair

Eugene Nelson, DSc Director of Quality Administration for the Dartmouth-Hitchcock Medical Center Lebanon, NH QII Study Co-Chair

n at i o n a l Pa r k i n s o n f o u n dat i o n

the Quality imProvement initiative:

Who Participates?

The centerpiece of the Parkinsons Outcome Project is the Quality Improvement

Initiative (QII) study. The study represents the broadest and most inclusive patient demographics ever assembled in a clinical study of Parkinsons disease. By studying the most effective care across the full spectrum of patient age, gender, age of onset and other variables, we seek to identify with ever-increasing precision exactly which factors lead to better outcomes for all people with Parkinsons. This international study, which was started in 2009, includes participants from across the United States as well as Canada, Israel and the Netherlands. Individuals with a confirmed diagnosis of Parkinsons disease are enrolled at each of the 20 participating centers.

NUMBER of paRticipaNts iN thE stUdy

Number of Patients in Study
10000

Since 2009, more than 5,500 individuals have joined the study, representing more

8000

than 9,000 clinic visits.

37%

Female

6000

63%
Male
4000 2000

0 1/1/10 7/1/10 1/1/11 7/1/09 4/1/11 10/1/09 7/1/11 10/1/11 4/1/10 4/1/12 10/1/10 1/1/12 7/1/12

Cumulative Patients Cumulative Visits

n at i o n a l Pa r k i n s o n f o u n dat i o n

Number of Participants by Age Group

500

NUMBER of paRticipaNts By aGE

This study represents a true cross-section of people with Parkinsons disease,

400

with participants ranging from 25 to 95 years old.

300

200

100

0
59-60 89-90 25-26 49-50 29-30 53-54 69-70 87-88 23-24 39-40 63-64 91-92 21-22 27-28 33-34 73-74 99-100 31-32 37-38 43-44 77-78 95-96 45-46 79-80 55-56 61-62 83-84 65-66 93-94 85-86 67-68 97-98 35-36 41-42 47-48 75-76 51-52 81-82 57-58 71-72

disEasE sEvERity
Disease Severity

The severity of Parkinsons disease has long been assessed using a

GENdER

Parkinsons disease is diagnosed more

Not Assesed Severe

5 point scale of mobility impairment. On this Hoehn and Yahr scale, stages

GENDER

commonly in men than in women. Women in the study are slightly

8% 27%
Mid

7%

one and two represent early disease, three is mid stage, and stages four and five are advanced Parkinsons

58%
Early

FEMALE

37%

older and have slightly more advanced

where typically it is difficult to stand unassisted.

63%
MALE

disease than men.

n at i o n a l Pa r k i n s o n f o u n dat i o n

Young-Onset Parkinsons
The QII study includes data from the largest cohort of young-onset Parkinsons of any study to date. Already, differences are emerging in how younger people experience Parkinsons itself, and how they perceive the effectiveness of their care. For example, we have identified that people with young-onset Parkinsons often progress slowly but feel their symptoms more intensely, perhaps because they are aware of how their visible symptoms set them apart from their peers. In particular, they typically assign a greater weight to the impact of decreased mobility on their lives. Establishing such differences is a first step toward developing best practices for treating individuals who develop Parkinsons at an early age.

yoUNG-oNsEt paRkiNsoNs disEasE

Age at Onset
300

This is the largest clinical study to date of people with youngonset Parkinsons. Almost 400 people

NUMBER OF PARTICIPANTS

250 200

with onset before 40 are providing unprecedented insight

37%

Female

63%
Male

150 100

into this seldomstudied group.

50 0

43-44

39-40

n at i o n a l Pa r k i n s o n f o u n dat i o n

49-50

45-46

29-30

41-42

33-34

35-36

47-48

23-24

25-26

31-32

37-38

<20

21-22

27-28

Long-Duration Parkinsons
This study is also the first to include more than 350 subjects who have lived with Parkinsons for more than 20 years. These people tend to be doing better than we would have predicted based on the trajectory of people with shorter-duration disease. In particular, they tend to be more active and have better cognition. By following these survivors and their care over time, we hope to learn what factors have kept them in better health.

disEasE dURatioN

Why do some people continue to thrive, in some cases, for decades? Study participants include more than 350

DISEASE DURATION
400

300

people who have had Parkinsons for more than 20 years.

200

100

48 Years

Maximum Duration

0
0 5 10 15 20 25 30 35 40 45 50+

YEARS

n at i o n a l Pa r k i n s o n f o u n dat i o n

Inconsistent Results, Even at Expert Centers

varieties of care:

While the participants in our study are unusually diverse, they share one thing in
common: they all have received care at specialty clinics in academic medical centers designated by NPF as Centers of Excellence. These centers are recognized leaders in Parkinsons care and meet rigorous criteria for research, care and outreach, evaluated in a peer-review site visit. The benefits of expert care are well established: those who see an expert neurologist live longer, better lives than those who dont. However, even specialized centers have different approaches to care, and achieve different outcomes. What, exactly, do various centers do differently? Measuring those differences is our first goal. Are those differences the real reason for better outcomes? Testing those explanations is our second goal. And finally, what is the best way to share these findings with everyone who provides Parkinsons care? Ultimately, the Parkinsons Outcomes Project is a cycle of learning. Physicians and therapists need to teach what theyve learned, learn what others have to teach, then repeat. Together, we can help everyone committed to discovering, understanding and sharing the most effective ways to treat Parkinsons.

Inconsistent Results Even at the Best the Centers iNcoNsistENt REsUlts EvEN at thE BEst cENtERs
30

Centers varied in patient-reported health status for their

25

patients, with the average health status varying by as much

HEALTH STATUS %

20

15

as 13 points after adjusting for disease

10

severity.

5 0

CENTERS

n at i o n a l Pa r k i n s o n f o u n dat i o n

Referrals for REfERRals different centers diffERENt cENtERs therapy at foR thERapy at
70 60 50

Referral rates to physical, occupational, speech and other therapists varied by as much as 50% in our study for similar

% REFERRED

40 30 20 10 0

people with midstage, uncomplicated Parkinsons.

CENTERS

MEdicatioNs foR Mid-staGE patiENts By cENtER MEDICATIONS FOR MID-STAGE PATIENTS BY CENTER
100 90 80

In many cases, there is little evidence to support one choice of medication over another. As a result, medication use can vary substantially from one neurologist to another, even for similar patients.

% PRESCRIBED

70 60 50 40 30 20 10 0

CENTERS None Standard Simple Complex

n at i o n a l Pa r k i n s o n f o u n dat i o n

The Importance of Addressing Depression and Anxiety

managing mood:

A clear finding of the study is that, taken together, depression and anxiety have
the greatest impact of health status. In fact, in a study of QII data presented at a Parkinsons conference in 2012, scientists showed that the impact of depression on health status is almost twice that of the motor impairments universally associated with Parkinsons. At least 50 percent of people with Parkinsons experience depression, and anxiety is also frequently reported. Depression can be disabling, resulting in difficulty with work or engaging in activities like exercise that can help manage symptoms. Yet physicians often have trouble recognizing anxiety and depression, or their roles in hampering efforts to treat Parkinsons. As previous studies have found, addressing depression can positively impact levels of disability, relapse and quality of life. Indeed, participants in clinics with the most active approach to counseling reported the lowest rates of depression. For many people with Parkinsons, acknowledging depression is a critical step toward more effective treatment, and better health status overall.

ovERall Overall Contribution to Health coNtRiBUtioN to hEalth

Mood & Depression Activities of Daily Living Mobility Cognition Communication Stigma Pain Social Support
0 10 20 30 40 50 60 70

Mood/depression and mobility are the most important contributors to overall health status for people with Parkinsons, and should be priorities in evaluating patients and developing care plans.

PERCENTAGE

10

n at i o n a l Pa r k i n s o n f o u n dat i o n

Depression Care
80

dEpREssioN caRE

Different centers will treat between 45% and 75% of people with

% WITH SIGNS OF DEPRESSION RECEVING CARE

signs of depression,
60

and how they treat people differs.

40

Some rely mostly on antidepressant

20

medications, while others use counseling extensively.

CENTERS Any Treatment Antidepressants Counseling

Depression in Parkinsons Disease

Depression in Parkinsons disease is mainly caused by a chemical imbalance in the brain; however, it can also arise from the simple sadness associated with the diagnosis of the disease. Antidepressants are often effective in reducing symptoms, but they should seldom be used in isolation. A mix of medication, exercise and counseling is typically most helpful in addressing depression, and may help further engage patients and families in other critical aspects of managing care for Parkinsons.

NPF Recommends:
Physicians should screen you for depression at least once a year. You should discuss any change in your mood with a healthcare professional, and make sure that your Parkinsons doctor is aware. You should bring a family member with you to your doctors office and he or she should be encouraged to discuss any changes in your mood.

n at i o n a l Pa r k i n s o n f o u n dat i o n

11

Second Most Important Driver of Health Status

impaired mobility in general is considered a defining element of the disease, and it was the second most influential factor on health status among study participants. The impact of mobility problems can be serious. They can affect your balance, your ability to walk, and even everyday tasks such as feeding and bathing. These problems can result in falls, injury and even death. In addition, difficulty walking can keep you from doing things that are important to you. Withdrawal from familiar activities can affect personal relationships, and even how you think others perceive you. The best way to protect your motor function is to use it regularly. A well-designed exercise plan can significantly improve almost everything about your health, including stabilizing your walking, calming tremor, improving mood, and possibly even slowing progression of the disease. Regular exercise is typically associated with a lower care burden, as well. Even as motor symptoms progress, many respond well to medical and surgical treatment. But staying active remains absolutely critical.

mobility:

Bradykinesia, or slowness of movement, is present in all cases of Parkinsons. Indeed,

Regular exercise (more than 2.5 hours per week) provides many

Mobility Impairment vs Exercise Frequency

50

MoBility iMpaiRMENt vs ExERcisE fREqUENcy

caREGivER stRaiN vs ExERcisE fREqUENcy Caregiver Strain vs Exercise Frequency

25

40

20

PERCENTAGE

with Parkinsons. It is associated with lower degrees of mobility impairment, caregiver burden, and impairment in everyday activities.

30

PERCENTAGE
None Casual Regular

benefits to people

15

20

10

10

None

Casual

Regular

12

n at i o n a l Pa r k i n s o n f o u n dat i o n

Mobility and Motor Control: Findings of the Quality Improvement Initiative

Although mobility impairment is a central challenge of Parkinsons, early data from the QII study suggests the importance of a holistic approach. People who addressed mood and mobility together, and who used a full complement of elements including medicine, surgery and exercise, were the most successful in managing the mobility aspects of their condition. Your symptoms are connected. Better mobility reduces depression, treating constipation helps with mobility, and so on. Talk to your doctor about whatever is bothering you.

NPF Recommends:
To feel good enough to exercise regularly, take your medications on time. Keep to your schedule. Exercise can help improve all your symptoms. Any exercise you can do safely will help. Talk with your doctor about both exercise and physical therapy. On your next visit, discuss the type of program you should pursue. If your symptoms become hard to manage, talk to your doctor about your options. There are many ways to try to control difficult symptoms. A physical or occupational therapist who understands Parkinsons can be a great resource between your physician visits.

n at i o n a l Pa r k i n s o n f o u n dat i o n

13

The Evidence We Need to Personalize Care

the future of Parkinsons:

No two people face Parkinsons in quite the same way. People vary substantially in
their combination of symptoms, rate of progression, and reaction to treatment. It may be that no two doctors approach Parkinsons in quite the same way, either; unlike many other diseases, there are no clearly established standards for treating a person with Parkinsons in a particular circumstance. As a result, two neurologists who might prescribe identical therapies for similar patients with Alzheimers disease would likely recommend different strategies for similar patients with Parkinsons. The reason is that, despite many prior studies on specific elements of the disease, none has successfully evaluated the full range of factors that bear on the experience of the disease. The Parkinsons Outcomes Project is beginning to change that. By embracing the diversity of people with Parkinsons, we are gathering the most complete data set ever assembled. By involving the worlds best neurologists at NPF Centers of Excellence, we are developing the best insights into individual care. And by working together, we will define standards of care for people with Parkinsons everywhere.

Participants where one issue stands out paRticipaNts whERE oNE issUE staNds oUt Stigma Social Support Pain Communication Cognition Activities of Daily Living Mood & Depression Mobility
0 2 4 6 8 10 12 14 16

For many people, one issue stands out as the most challenging part of Parkinsons. Over half the people in the study had one aspect of Parkinsons that was much more troubling than the others. Everyones journey is different.

PERCENTAGE

14

n at i o n a l Pa r k i n s o n f o u n dat i o n

Parkinsons outcomes Project:

Participating Centers of Excellence
The QII, part of the Parkinsons Outcome Project, is overseen by a steering committee of the lead investigators at each participating NPF Center of Excellence and a group of leaders in care quality from the broader community. At the 20 participating centers, 153 physicians, supported by 96 research assistants, have participated in delivering care to the more than 5,500 people with Parkinsons in the study. Each of these individuals is engaged daily in delivering the best care they can to people with Parkinsons, and each joins us in our goal of changing the course of Parkinsons.

Baylor College of Medicine Houston, TX

Joseph Jankovic, MD Center PrinCiPal investigator Christine Hunter, RN, CCRC Center Coordinator

Georgetown University Washington, DC

Fernando Pagan, MD Center PrinCiPal investigator Helen Howard, MA, RN Center Coordinator

Mount Sinai Medical Center New York, NY

Barbara Changizi, MD Center PrinCiPal investigator Joan Bratton Amber Servi Center Coordinators

Beth Israel Deaconess Medical Center Boston MA

Daniel Tarsy, MD Center PrinCiPal investigator Althea Silver, MPH, BSN, RN Center Coordinator

Johns Hopkins University Baltimore, MD

Zoltan Mari, MD Center PrinCiPal investigator Rebecca Dunlop, RN, BSN Arita McCoy, RN Center Coordinators

Muhammad Ali Parkinson Center of Barrow Neurological Institute Phoenix, AZ

Anthony Santiago, MD Center PrinCiPal investigator Margaret Anne Coles, BSR, MQI, OTR/L Patty Hatton, CTRS Center Coordinators

Georgia Health and Science University Augusta, GA

John Morgan, MD, PhD Center PrinCiPal investigator Lisa Bush Zachary Martin Center Coordinators

Centre for Movement Disorders Toronto, Canada

Mark Guttman, MD Center PrinCiPal investigator Alanna Sheinberg Kevin Sorokin Center Coordinators

Northwestern University Chicago, IL

Tanya Simuni, MD Center PrinCiPal investigator Elaina Ziehm Center Coordinator

n at i o n a l Pa r k i n s o n f o u n dat i o n

15

Oregon Health and Science University Portland, OR

John Nutt, MD Center PrinCiPal investigator Anna Lovelace Center Coordinator

University of Kansas Medical Center Kansas City, KS

Kelly Lyons, PhD Center PrinCiPal investigator Jessica Cooper, BS, BGS Center Coordinator

Radboud University Nijmegen Medical Center Nijmegen, The Netherlands

Bastiaan Bloem, MD Center PrinCiPal investigator Bart Post, MD Center Coordinator

Parkinsons Institute and Clinical Center Sunnyvale, CA

Melanie Brandabur, MD Center PrinCiPal investigator Lizza Reys Center Coordinator

University of South Florida Tampa, FL

Robert Hauser, MD, MBA Center PrinCiPal investigator Claudia Rocha Holly Delgado, RN Center Coordinators

Tel-Aviv Sourasky Medical Center Tel-Aviv, Israel

Nir Giladi, MD study advisor Tanya Gurevich, MD Center PrinCiPal investigator Naama Cohen Dana Yekutieli Tzur, BSc Center Coordinators

Struthers Parkinsons Center Golden Valley, MN

Sotirios Parashos, MD, PhD Center PrinCiPal investigator Joan Gardner, RN Catherine Wielinski, MPH Center Coordinators

Vanderbilt University Nashville, TN

Thomas Davis, MD Center PrinCiPal investigator Kelly Arney, MSSW Center Coordinator

Toronto Western Hospital Toronto, Canada

Janis Miyasaki, MD, FRCPC Center PrinCiPal investigator Julie Racioppa Center Coordinator

University of Florida Gainesville, FL

Michael Okun, MD study advisor Irene Malaty, MD Center PrinCiPal investigator Amanda Eilers Center Coordinator

University of Pennsylvania Philadelphia, PA

Nabila Dahodwala, MD Center PrinCiPal investigator James Minger Center Coordinator

Other Study Advisors

Eric Cheng, MD
University of California San Francisco, San Francisco, CA

Laura Marsh, MD
Michael E. DeBakey VA Medical Center, Houston, TX

16

n at i o n a l Pa r k i n s o n f o u n dat i o n

References
The main findings reported in this document are derived from the QII study and presentations and publications based on its information. These publications include: A. Hassan, S.S. Wu, P. Schmidt, I. Malaty, Y.F. Dai, J.M. Miyasaki, M.S. Okun. What are the issues facing Parkinsons disease patients at ten years of disease and beyond? Data from the NPF-QII study. Parkinsonism and Related Disorders. 2012. 18(8):925-30. A. Hassan, S.S. Wu, P. Schmidt, I. Malaty, M.S. Okun, Risk Factors for ER and Hospitalization in Parkinsons disease: Results from the NPF Quality Improvement Initiative (NPF-QII). Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. J.D. Jones, I. Malaty, C.C. Price, M.S. Okun, D. Bowers. Health comorbidities and cognition in 1948 patients with idiopathic Parkinsons disease. Data from the NPF-QII study. Parkinsonism and Related Disorders. 2012. In press. M. Kwasny, O. Oguh, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Speech therapy utilization in Parkinsons disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. J.G. Nutt, A.D. Siderowf, M. Guttman, E.C. Nelson, P. Schmidt, J. Zamudio, S.S. Wu, M.S. Okun, on behalf of the NPF-QII investigators. Correlates of health-related quality of life (HRQL) in Parkinsons disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. O. Oguh, M. Kwasny, J. Carter, T. Simuni, on behalf of the NPF-QII investigators. Predictors of caregiver burden in Parkinsons disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. O. Oguh, M. Kwasny, T. Simuni C., Zadikoff on behalf of the NPF-QII investigators. Racial disparities in access to deep brain stimulation. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. O. Oguh, M. Kwasny, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Predictors of caregiver burden in Parkinsons disease. American Academy of Neurology 64th Annual Meeting. New Orleans, Louisiana. 2012.

n at i o n a l Pa r k i n s o n f o u n dat i o n

17

O. Oguh, M. Kwasny, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Predictors of exercise habits in Parkinsons disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. M.S. Okun, A. Siderowf, J.G. Nutt, G.T. OConner, B.R. Bloem, E.M. Olmstead, M. Guttman, T. Simuni, E. Cheng, E.V. Cohen, S. Parashos, L. Marsh, I. Malaty, N. Giladi, P. Schmidt, J. Oberdorf,. Piloting the NPF data-driven quality improvement initiative. Data from the QII study. Parkinsonism and Related Disorders. 2010. 16(8):517-21. S.A. Parashos, C.L. Wielinski, on behalf of the NPF QII investigators. National Parkinson Foundation Quality Improvement Initiative: Risk Factors for Falls in Parkinson Disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. P. Schmidt, M.S. Okun, A.D. Siderowf, J.G. Nutt, G.T. OConner, B.R. Bloem, E.M. Olmstead, M. Guttman, T. Simuni, E. Cheng, S.A. Parashos, L. Marsh, I.A. Malaty, N. Giladi, S.S. Wu, J. Oberdorf. Are results from PD trials generalizable? The NPF database reveals a mismatch between typical clinic populations and subjects in PD trials. World Parkinsons Congress 2nd International Congress. Glasgow, Scotland. 2010. P. Schmidt, A.D. Siderowf, M. Guttman, E. Nelson, J. Zamudio, M.S. Okun, J.G. Nutt, on behalf of the NPFQII investigators. How should pushing off or the use of assistive devices be incorporated in the timed up and go (TUG)? Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. P. Schmidt, J. Zamudio, M. Guttman, J. Nutt, A. Siderowf, E. Nelson, on behalf of the NPF-QII investigators. Variation of patient-reported outcomes (PDQ-39) in a cross-sectional analysis of the NPF-QII research registry. American Academy of Neurology 64th Annual Meeting. New Orleans, Louisiana. 2012. P. Schmidt. Current and future impact on clinical practice. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012. B. Stell , O. Oguh, M. Kwasny, T. Simuni, on behalf of the NPF-QII investigators. Utilization of antidepressants and mental health services in a large cohort of patients with Parkinsons disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

18

n at i o n a l Pa r k i n s o n f o u n dat i o n

In addition to the QII study, important points and recommendations concerning Parkinsons are drawn from a range of publications, including: J.M. Miyasaki, K. Shannon, V. Voon, B. Ravina, G. Kleiner-Fisman, K. Anderson, L.M. Shulman, G. Gronseth, W.J. Weiner; Quality Standards Subcommittee of the American academy of neurology. Practice Parameter: evaluation and treatment of depression, psychosis, and dementia in Parkinson disease (an evidence-based review): report of the QualityStandards Subcommittee of the American Academy of Neurology. Neurology. 2006. 66(7):996-1002. S.K. Van Den Eeden, C.M. Tanner, A.L. Bernstein, R.D. Fross, A. Leimpeter, D.A. Bloch, L.M. Nelson. Incidence of Parkinsons disease: variation by age, gender, and race/ethnicity. American Journal of Epidemiology. 2003. 157(11):1015-22. J.M. Pavon, H.E. Whitson, M.S. Okun. Parkinsons disease in women: a call for improved clinical studies and for comparative effectiveness research. Maturitas. 2010. 65(4) 352-8. C. Goetz, W. Poewe, O. Rascol, C. Sampiro, G.T. Stebbins, C. Counsell, N. Giladi, R.G. Holloway, C.G. Moore, G.K. Wenning, M.D. Yahr, L. Seid; Movement Disorder Society Task Force on Rating Scales for Parkinsons Disease. Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: status and recommendations. Movement Disorders. 2004. 19(9):1020-8. L.O. Ramig, S. Sapir, S. Countryman, A.A. Pawlas, C. OBrien, M. Hoehn, L.L. Thompson. Intensive voice treatment (LSVT) for patients with Parkinsons disease: a 2 year follow up. Journal of Neurology, Neurosurgery, and Psychiatry. 2001. 71(4):493-8.

n at i o n a l Pa r k i n s o n f o u n dat i o n

19

QII Study Support

Over the past two years, the National Parkinson Foundation has invested more than $2 million in this study. This important research initiative is made possible by the support of thousands of people like you who made a donation to support the National Parkinson Foundation, and generous support from the following foundations and corporations: Abbott Braman Family Foundation, Inc. Major League Baseball Players Trust Parkinson Association of Minnesota Parkinsons Unity Walk South Palm Beach County, Chapter of the National Parkinson Foundation St. Jude Medical Teva Neuroscience, Inc. The Greenberg-May Foundation, Inc. The Kinetics Foundation The Leir Charitable Foundation The Thompkins-Broll Family Foundation

20

n at i o n a l Pa r k i n s o n f o u n dat i o n

About the National Parkinson Foundation Unique among the Parkinsons organizations, the National Parkinson Foundation (NPF) has a singular focus: our mission is to improve the quality of care through research, education and outreach. We have created a global network serving the needs of the Parkinsons community including: 41 Centers of Excellence at top medical centers around the world, including 26 in the U.S. and 15 internationally An extensive network of chapters and support groups across the U.S., serving more than 100,000 people with Parkinsons and their families Website and educational materials that reach more than 1 million people each year.

Find Answers. Change Lives. Beat Parkinsons.

1501 NW 9th Avenue Bob Hope Road Miami, FL 33138

Parkinson.org 305.243.6666 305.243.6073 800.4PD.INFO

web office fax helpline