Imagine
trying to drive across country with a map from the 1970s. How can you plan for
the journey ahead with outdated information? That is the problem we face in
Parkinson’s disease (PD) when it comes to figuring out how many people are
living with it.
Forty
years ago, scientists gave us initial estimates of how many people live with
Parkinson’s. They range anywhere from 600,000 to one million. But those numbers
are imperfect and out-of-date. And it is important to the future of research
and care that we update them. It’s possible, for example, that there are
dramatically more people living with Parkinson’s disease than we realize. That
knowledge may, in turn, increase investments from government and industry.
To
make this happen, PDF is investing $250,000 in a project we call P4 — the PDF
Parkinson’s Prevalence Project. We are funding six groups of epidemiology
experts who are using different sets of data (i.e., medical records, clinical
trial data) to help us understand who has Parkinson’s in the US and Canada.
Here’s a quick update:
Connie
Marras, M.D., Ph.D., is mining a database of 11 million health records
from Ontario, Canada (that’s one-third of the entire Canadian
population!) to understand how many people in Ontario live with PD. The results
could be helpful for the US too, as the demographics of Ontario are very
similar to those in states like Kansas, Indiana and Missouri.
G.
Webster Ross, M.D., and Caroline Tanner, M.D., Ph.D., are analyzing data from
the Honolulu-Asia Aging Study, which followed Japanese-American men living
in Oahu, HI (born between 1900-1919) for 47 years. Because the
men were followed for such a long time, the results will help us understand how
prevalence of PD changes with age.
James
Bower, M.D., and Rodolfo Savica, M.D., M.Sc.,are examining all electronic
medical records of residents of Olmsted County, MN, which were
collected as part of the Mayo Clinic’s Rochester Epidemiology Project. By
analyzing such high quality records for evidence of PD, they may capture a
complete picture of the disease in a community.
Stephen
Van Den Eeden, Ph.D., is probing the electronic medical record database for
Kaiser Permanente Northern California to determine the prevalence of
parkinsonism in California’s Greater San Francisco Bay and Sacramento
metropolitan areas. Because Kaiser’s 3.8 million members represent 25 to 30
percent of the population in these regions, this may give a fairly accurate
picture of PD in that area.
Dr.
Tanner (mentioned earlier) is examining the prevalence of PD in four
California counties (Santa Clara, Kern, Tulare, and Fresno) as part of
the California Parkinson’s Registry Pilot Project. She is examining health
records from nearly 300 medical practices collected from 2008 to 2010. Because
the records are from both urban and rural populations, she can analyze any
differences in PD prevalence between the two types of communities.
Allison
W. Willis, M.D., M.S., and colleagues are extending their previous research
into data from the Centers for Medicaid and Medicare Services (CMS). The CMS
provides health coverage for about 30 million people in the US —
nearly 95 percent of people over the age of 65. Dr. Willis previously studied
neurology-related insurance claims from the CMS database related to PD, to
estimate how many people among those 30 million might have the disease. But,
because PD is so difficult to diagnose, she is taking a harder look at those
claims — and diagnosis records — to see if they are accurate.
Conclusion:
What's in a Number?
PDF’s
hope is that with P4, we will not only have better estimates of Parkinson’s
disease prevalence, but also greater assurance that these numbers are more
meaningful. Our scientists are studying rural and urban communities, men and
women, and people of different racial and ethnic backgrounds. Their findings
will help us to understand prevalence in general, and how it might vary in
different communities. And when we have better information — how many people
have Parkinson’s disease and who they are — we’ll have a much better roadmap to
the cure.
http://www.pdf.org/spring16_spotlight?utm_source=newsletter&utm_medium=email&utm_campaign=general
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