Parkinson’s Outcomes Project:
Report to the Community
Find Answers. Change Lives. Beat Parkinson’s.
The Parkinson’s Outcomes Project
The mission of the Parkinson’s 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 Parkinson’s Community:
We now have the
A little over three years ago, the National Parkinson Foundation (NPF) launched an
unprecedented research collaboration: the Quality Improvement Initiative (QII), part of
deepest pool of
the Parkinson’s Outcomes Project. It is the largest clinical study of Parkinson’s disease ever
conducted, and the first with the primary goal of identifying and explaining factors that result
Parkinson’s data
in longer, better, and more active lives for people with Parkinson’s.
ever collected. If
The result is the deepest pool of Parkinson’s data ever collected, from some 5,500 people in four
you have Parkinson’s,
countries. If you have Parkinson’s, there is almost certainly someone like you participating in
there is almost
the study. Some are thriving; others are not doing as well. Our goal is to determine what makes
certainly someone
that difference. We can now consider the interplay of factors that produce different results in
different people, and likely paths toward better outcomes.
like you participating
in the study.
Unlike prior studies, this initiative encompasses the entire spectrum of Parkinson’s 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 Parkinson’s
ever conducted.
Our study is equally inclusive in terms of the experience of individuals with Parkinson’s. More
than 650 participants manage at least two other serious illnesses—a 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.
n at i o n a l Pa r k i n s o n f o u n dat i o n
1
This comprehensive evaluation reflects the complicated nature of Parkinson’s, 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 Parkinson’s, all part of
NPF’s 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 Parkinson’s 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 Parkinson’s feel—their mood and depression—is 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 Parkinson’s 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
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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 today’s
care, but to help guide tomorrow’s.
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,
Tanya Simuni, MD
caregivers, clinicians, and researchers whose participation is steadily filling gaps in our
understanding, and supporting a brighter future in the fight against Parkinson’s. We look
forward to future reports to you, the Parkinson’s community, on our progress.
John Nutt, MD
Tanya Simuni, MD
Director of the NPF Center of Excellence
Director of the NPF Center of Excellence
Movement Disorders Center at Oregon
Parkinson’s Disease and Movement Disorders
Health and Science University, Portland, OR
Center at Northwestern University, Chicago, IL
QII Study Co-Chair
QII Study Co-Chair
Mark Guttman, MD
Eugene Nelson, DSc
Director of the NPF Center of Excellence
Director of Quality Administration for the
Center for Movement Disorders in
Dartmouth-Hitchcock Medical Center
Markham Ontario, Toronto, Canada
Lebanon, NH
QII Study Co-Chair
QII Study Co-Chair
Eugene Nelson, DSc
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The Quality Improvement Initiative:
Who Participates?
The centerpiece of the Parkinson’s 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 Parkinson’s 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 Parkinson’s.
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 Parkinson’s disease are enrolled at each of the 20 participating
centers.
NUMBER of participants in the study
Since 2009, more
Number of Patients in Study
than 5,500 individuals
have joined the study,
10000
representing more
than 9,000 clinic
8000
visits.
37%
Female
6000
63%
Male
4000
2000
Cumulative Patients
Cumulative Visits
4
n at i o n a l Pa r k i n s o n f o u n dat i o n
7/1/12
4/1/12
1/1/12
10/1/11
7/1/11
4/1/11
1/1/11
10/1/10
7/1/10
4/1/10
1/1/10
10/1/09
7/1/09
0
number of Participants by age
This study represents
Number of Participants by Age Group
a true cross-section
500
of people with
Parkinson’s disease,
with participants
400
ranging from 25 to 95
years old.
300
200
100
Disease Severity
97-98
Gender
The severity of Parkinson’s disease
Parkinson’s disease
is diagnosed more
has long been assessed using a
Disease Severity
Not Assesed
5 point scale of mobility impairment.
On this Hoehn and Yahr scale, stages
Severe
8%
7%
and five are advanced Parkinson’s
27%
Mid
commonly in men than
GENDER
in women. Women in
the study are slightly
one and two represent early disease,
three is mid stage, and stages four
58%
Early
where typically it is difficult to stand
unassisted.
99-100
95-96
91-92
93-94
87-88
89-90
85-86
81-82
83-84
77-78
79-80
75-76
71-72
73-74
69-70
67-68
65-66
61-62
63-64
57-58
59-60
55-56
51-52
53-54
47-48
49-50
45-46
41-42
43-44
37-38
39-40
35-36
31-32
33-34
27-28
29-30
25-26
21-22
23-24
0
older and have slightly
37%
more advanced
FEMALE
63%
disease than men.
MALE
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Young-Onset Parkinson’s
The QII study includes data from the largest cohort of young-onset Parkinson’s of any
study to date. Already, differences are emerging in how younger people experience
Parkinson’s itself, and how they perceive the effectiveness of their care.
For example, we have identified that people with young-onset Parkinson’s 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 Parkinson’s at an early age.
Young-Onset Parkinson’s Disease
This is the largest
clinical study to date
Age at Onset
of people with youngonset Parkinson’s.
300
37%
Female
63%
Male
NUMBER OF PARTICIPANTS
Almost 400 people
250
with onset before
40 are providing
200
unprecedented insight
150
into this seldom-
100
studied group.
50
6
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49-50
47-48
45-46
43-44
41-42
39-40
37-38
35-36
33-34
31-32
29-30
27-28
25-26
23-24
21-22
<20
0
Long-Duration Parkinson’s
This study is also the first to include more than 350 subjects who have lived with
Parkinson’s 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,
DISEASE DURATION
in some cases, for
decades? Study
400
participants include
more than 350
people who have had
300
Parkinson’s for more
than 20 years.
200
Maximum
Duration
48 Years
100
0
0
5
10
15
20
25
30
35
40
45
50+
YEARS
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Varieties of Care:
Inconsistent Results, Even at Expert Centers
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
Parkinson’s 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 don’t. 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 Parkinson’s care?
Ultimately, the Parkinson’s Outcomes Project is a cycle of learning. Physicians and
therapists need to teach what they’ve 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 Parkinson’s.
Inconsistent Results Even at the Best the Centers
inconsistent results even at the best centers
Centers varied in
30
patient-reported
health status for their
HEALTH STATUS %
25
patients, with the
average health status
20
varying by as much
as 13 points after
15
adjusting for disease
10
severity.
5
0
CENTERS
8
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for therapy
at different centers
Referrals for referrals
therapy at different
centers
physical, occupational,
70
speech and other
60
therapists varied by
as much as 50% in
50
% REFERRED
Referral rates to
our study for similar
40
people with midstage, uncomplicated
30
Parkinson’s.
20
10
0
CENTERS
for
Mid-stage
patients by center
MEDICATIONSmedications
FOR MID-STAGE
PATIENTS
BY CENTER
is little evidence to
100
support one choice
90
of medication over
80
% PRESCRIBED
In many cases, there
another. As a result,
70
medication use can
60
vary substantially
50
40
from one neurologist
30
to another, even for
20
similar patients.
10
0
CENTERS
None
Standard
Simple
Complex
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9
Managing Mood:
The Importance of Addressing
Depression and Anxiety
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 Parkinson’s.
At least 50 percent of people with Parkinson’s 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 Parkinson’s.
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 Parkinson’s, 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 and
mobility are the most
important contributors
Mood & Depression
to overall health
Activities of Daily Living
status for people
Mobility
with Parkinson’s, and
Cognition
should be priorities
in evaluating patients
Communication
and developing care
Stigma
plans.
Pain
Social Support
0
10
20
30
40
PERCENTAGE
10
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50
60
70
Depression Care
depression care
Different centers will
treat between 45% and
80
% WITH SIGNS OF DEPRESSION
RECEVING CARE
75% of people with
signs of depression,
60
and how they treat
people differs.
Some rely mostly
40
on antidepressant
medications, while
20
others use counseling
extensively.
0
CENTERS
Any Treatment
Antidepressants
Counseling
Depression in Parkinson’s Disease
Depression in Parkinson’s 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 Parkinson’s.
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 Parkinson’s doctor is aware.
• You should bring a family member with you to your doctor’s office and he
or she should be encouraged to discuss any changes in your mood.
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Mobility:
Second Most Important Driver
of Health Status
Bradykinesia, or slowness of movement, is present in all cases of Parkinson’s. Indeed,
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 impairment vs exercise frequency
Regular exercise (more
with Parkinson’s. It
is associated with
lower degrees of
mobility impairment,
PERCENTAGE
week) provides many
50
25
40
20
30
20
10
and impairment in
everyday activities.
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15
10
5
0
caregiver burden,
12
PERCENTAGE
than 2.5 hours per
benefits to people
Caregiver
strain vs exercise frequency
Caregiver Strain vs Exercise Frequency
Mobility Impairment vs Exercise Frequency
0
None
Casual
Regular
None
Casual
Regular
Mobility and Motor Control:
Findings of the Quality Improvement Initiative
Although mobility impairment is a central challenge of Parkinson’s, 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 Parkinson’s can
be a great resource between your physician visits.
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The Future of Parkinson’s:
The Evidence We Need to Personalize Care
No two people face Parkinson’s 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 Parkinson’s in quite the same way, either;
unlike many other diseases, there are no clearly established standards for treating a
person with Parkinson’s in a particular circumstance. As a result, two neurologists who
might prescribe identical therapies for similar patients with Alzheimer’s disease would
likely recommend different strategies for similar patients with Parkinson’s.
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 Parkinson’s Outcomes Project is beginning to change that.
By embracing the diversity of people with Parkinson’s, we are gathering the most
complete data set ever assembled. By involving the world’s 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
Parkinson’s everywhere.
Participants where
one issue stands
outone issue stands out
participants
where
For many people, one
issue stands out as
Stigma
the most challenging
Social Support
part of Parkinson’s.
Over half the people
Pain
in the study had one
Communication
aspect of Parkinson’s
Cognition
that was much more
Activities of Daily Living
troubling than the
Mood & Depression
others. Everyone’s
journey is different.
Mobility
0
2
4
6
8
PERCENTAGE
14
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10
12
14
16
Parkinson’s Outcomes Project:
Participating Centers of Excellence
The QII, part of the Parkinson’s 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 Parkinson’s in the study. Each of these individuals is
engaged daily in delivering the best care they can to people with Parkinson’s, and each joins us in our
goal of changing the course of Parkinson’s.
Baylor College of Medicine
Houston, TX
Georgetown University
Washington, DC
Mount Sinai Medical Center
New York, NY
Joseph Jankovic, MD
Center Principal Investigator
Fernando Pagan, MD
Center Principal Investigator
Barbara Changizi, MD
Center Principal Investigator
Christine Hunter, RN, CCRC
Center Coordinator
Helen Howard, MA, RN
Center Coordinator
Joan Bratton
Amber Servi
Center Coordinators
Beth Israel Deaconess
Medical Center
Boston MA
Johns Hopkins University
Baltimore, MD
Daniel Tarsy, MD
Center Principal Investigator
Althea Silver, MPH, BSN, RN
Center Coordinator
Georgia Health and
Science University
Augusta, GA
John Morgan, MD, PhD
Center Principal Investigator
Lisa Bush
Zachary Martin
Center Coordinators
Zoltan Mari, MD
Center Principal Investigator
Rebecca Dunlop, RN, BSN
Arita McCoy, RN
Center Coordinators
Centre for Movement Disorders
Toronto, Canada
Mark Guttman, MD
Center Principal Investigator
Alanna Sheinberg
Kevin Sorokin
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
Northwestern University
Chicago, IL
Tanya Simuni, MD
Center Principal Investigator
Elaina Ziehm
Center Coordinator
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Oregon Health
and Science University
Portland, OR
University of Kansas
Medical Center
Kansas City, KS
Radboud University
Nijmegen Medical Center
Nijmegen, The Netherlands
John Nutt, MD
Center Principal Investigator
Kelly Lyons, PhD
Center Principal Investigator
Bastiaan Bloem, MD
Center Principal Investigator
Anna Lovelace
Center Coordinator
Jessica Cooper, BS, BGS
Center Coordinator
Bart Post, MD
Center Coordinator
Parkinson’s Institute
and Clinical Center
Sunnyvale, CA
University of South Florida
Tampa, FL
Tel-Aviv Sourasky Medical Center
Tel-Aviv, Israel
Robert Hauser, MD, MBA
Center Principal Investigator
Nir Giladi, MD
Study Advisor
Lizza Reys
Center Coordinator
Claudia Rocha
Holly Delgado, RN
Center Coordinators
Tanya Gurevich, MD
Center Principal Investigator
Struthers Parkinson’s Center
Golden Valley, MN
Vanderbilt University
Nashville, TN
Sotirios Parashos, MD, PhD
Center Principal Investigator
Thomas Davis, MD
Center Principal Investigator
Toronto Western Hospital
Toronto, Canada
Joan Gardner, RN
Catherine Wielinski, MPH
Center Coordinators
Kelly Arney, MSSW
Center Coordinator
Janis Miyasaki, MD, FRCPC
Center Principal Investigator
Melanie Brandabur, MD
Center Principal Investigator
University of Florida
Gainesville, FL
Michael Okun, MD
Study Advisor
Irene Malaty, MD
Center Principal Investigator
Amanda Eilers
Center Coordinator
16
n at i o n a l Pa r k i n s o n f o u n dat i o n
University of Pennsylvania
Philadelphia, PA
Nabila Dahodwala, MD
Center Principal Investigator
James Minger
Center Coordinator
Naama Cohen
Dana Yekutieli Tzur, BSc
Center Coordinators
Julie Racioppa
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
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
Parkinson’s 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 Parkinson’s
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 Parkinson’s 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
Parkinson’s 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 Parkinson’s 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 Parkinson’s 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 Parkinson’s 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 Parkinson’s disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.
M.S. Okun, A. Siderowf, J.G. Nutt, G.T. O’Conner, 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. O’Conner, 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 Parkinson’s 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 Parkinson’s 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 Parkinson’s 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 Parkinson’s 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. Parkinson’s 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 Parkinson’s
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. O’Brien, M. Hoehn, L.L. Thompson. Intensive
voice treatment (LSVT) for patients with Parkinson’s 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
Parkinson’s 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 Parkinson’s 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
Parkinson’s 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 Parkinson’s
and their families
• Website and educational materials that reach more than
1 million people each year.
Find Answers. Change Lives. Beat Parkinson’s.
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