Parkinson's Foundation Quality Improvement Initiative

In a recent study it was found that neurologist care for Parkinson's provides a 20% reduction
in nursing home placement, hip fracture, and death (Willis 2011). However, as the authors
recognized, we don't know what it is about expert care that delivers this benefit. The
Parkinson's Foundation's Quality Improvement Initiative was designed to identify the
components of great care that yield great outcomes. By capturing demographics, clinical
interventions and outcomes over time from multiple centers across the U.S, Canada and
internationally, the best care practices for improving care, survival, and quality of life
from different clinics and different healthcare systems will be analyzed.

The Parkinson's Foundation's QII contains demographic data, information about the patient's
Parkinson's disease and other comorbid illness, patient assessments of Parkinson's related
physical, emotional and cognitive disability and clinician tests of mobility, memory and
cognition. It also includes data on the burden of the disease on caregivers. The tests and
questionnaire instruments are currently in regular use in clinical practice. The intent of
the registry is not to evaluate the instruments themselves but to collect essential data from
previously validated tools.

Registry data will be used to study the relationship between treatment and clinical symptoms
of patients with Parkinson's. It will also be used to evaluate and improve care of patients
at participating Centers. Through presentation and publication of results, it is hoped that
improvement will become more widespread. Important benefits provided by such a Registry may
ultimately be to:

- Determine the long term effects of Parkinson's disease and related conditions on quality
of life;

- Generate regular reports for Centers including descriptions of their Parkinson's patient
populations, treatments utilized at the Center and trends in their patients' outcomes
over time;

- Describe differences in current practice across Centers in the care of Parkinson's
patients;

- Identify patients who may be candidates for participation in trials of new medications;

- Facilitate or initiate quality improvement efforts intended to enhance survival and/or
improve quality of life for Parkinson's disease patients; and

- Publish and otherwise disseminate findings related to most effective treatments to
encourage rapid adoption of "best practices."

Inclusion Criteria:

- Patients diagnosed with idiopathic Parkinson's disease receiving medical care for the
diagnosis of idiopathic Parkinson's disease at any of the participating Centers.

Exclusion Criteria:

Patients who are not willing or won't be able to give written informed consent.