5Impact on Parkinson’s Care and Clinical Tracking (IMPACCT)

To both provide a data baseline for research and to ensure all PPRC clinic patients receive the same standard of care with reduced wait times, Dr. Martin McKeown and Dr. Silke Cresswell created an electronic medical records (EMR)-based standardized clinical assessment database with a Parkinson’s assessment tool to ensure consistency in evaluation and support. Called IMPACCT (Impact on Parkinson’s Care and Clinical Tracking), this database replaced the previous paper-based system and has fundamentally transformed how data are collected and stored. By moving to an EMR system, it became possible to conduct longitudinal monitoring of patient progress, a vital component in research.

IMPACCT was funded through proceeds from Porridge for Parkinson’s events.

IMPACCT created the opportunity for PPRC scientists to access large samples sizes of patient data to inform research. However, accessing that data requires ensuring patient consent and protecting their confidentiality. To achieve this, a second project was launched to build upon IMPACCT by building a clinical database. Research coordinator Kristen Sundvick developed ethics protocols, gathered patient consent and worked with a specialized software company to create a program to automatically export consenting patients’ anonymized data to the clinical database for research. It has become one of the largest single-centre databases in the world, with data for more than 1100 patients. The PPRC clinical database furthers Parkinson’s research both at PPRC and around the world, as data sets from PPRC are contributed to multi-national studies.

PPRC’s clinical database was funded by PPRI donor, The Mottershead Foundation.