Rad PDThe Registry for the Advancement of Deep Brain Stimulation in Parkinson’s Disease (RAD-PD) is a quality improvement patient registry in the United States. RAD-PD represents a new era of investigation of DBS therapy in which patient-reported outcomes and clinician-administered rating scales are coupled with a thorough catalog of demographic features, disease-related details, therapeutic methods and characteristics as well as an imaging repository to create the most comprehensively characterized cohort of individuals undergoing DBS for treatment of Parkinson’s disease (PD).
Data acquired from study participants will enable the development of a comprehensive database for DBS treatment for PD. The large data sets generated provide insight into treatment patterns and related outcomes.
Participation will help clinicians identify ways to improve DBS treatment processes and patient outcomes. Linkage to external (e.g., Medicare) data sets will allow for health economics analyses. Hypothesis-driven research questions can also be answered.
RAD-PD is possible by the concerted efforts of a number of collaborators, including the NeuroPoint Alliance, Inc.; and the Parkinson Study Group and is sponsored by the Michael J. Fox Foundation for Parkinson’s Research.
What is Quality Improvement?
RAD-PD is a prospective quality improvement (QI) registry. In health services effectiveness research, the principal aim is to improve treatment processes and patient outcomes, in this case, related to DBS for PD. The data that is systematically gathered is purpose-driven in order to feed actionable information back to providers to improve care.
Reporting in such a structure can include benchmarking to:
- Compare individual sites and group performance;
- Visualize benchmarked metrics and key performance indicators; and
- Support individual analyses at the site level with ad hoc reporting.
This structure will ultimately help sites providing DBS care to identify and discuss best practices to collectively improve treatment processes and patient outcomes.
Data Collected
The following broad categories of data elements will be obtained:
- Demographic and social variables
- PD and PD treatment history, including medical and surgical interventions
- Assessments of motor function
- Assessment of non-motor symptoms
- Quality of life and health economics indicators
- Adverse effects
Data will be collected at the following time points:
- Baseline (Before surgery)
- Surgery
- Six (6) months
- Annually through five years
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Governance
RAD-PD is governed by a multidisciplinary Steering Committee comprised of members of the Parkinson Study Group. An advisory committee composed of representatives of the Michael J. Fox Foundation, a patient advocate and industry representatives provide additional input for consideration. A Scientific Committee and Data Use and Access Committee will assist with management of benchmarks and data reporting as well as research activities and publications.