MJFF Awards UCLA $750K to Improve California’s Parkinson’s Registry

The Michael J. Fox Foundation has awarded a $750,000 grant to University of California, Los Angeles (UCLA) scientists working to make that state’s Parkinson’s disease registry more efficient and of greater value to doctors, researchers and patients alike.

Specifically, the 18-month grant will be used to redesign the statewide electronic health record (EHR) system to make it easier to collect Parkinson’s diagnosis and treatment data for the California Parkinson’s Disease Registry (CPDR). The registry was funded by the state legislature in 2018 and is up for renewal next year.

“The big picture goal is to combine clinical care of patients affected by Parkinson’s disease with 21st health IT,” said project leader and UCLA neurologist Allan Wu, in a press release. “We can make taking care of PD [Parkinson’s disease] patients a joy and a relief while supporting epidemiology, quality of care, and research.”

By gathering data on the prevalence and location of Parkinson’s cases statewide, the registry is designed to help investigators and clinicians better understand the breadth of the disease’s impact, and in what areas California residents might be at most risk.

To make sure the reworked registry meets all users’ needs, the project brings together physicians, neurologists, and information sciences experts.

“It’s really nice that this collaboration brings together so many very different perspectives,” said UCLA  neurologist Andrew Wilson, a project co-principal investigator. “We’re really trying to add tools to help doctors be better doctors to patients with PD, so that no matter what provider patients go to, everyone’s going to be more PD informed.

“It’s not just education, but tools to truly make it easy for doctors to consistently provide quality care and to efficiently document that such care was provided,” Wilson added.

One major step toward registry improvement will be the establishment of standards for how diagnoses are reported. “We lack standards that recognize the complexity of neurological disease, symptoms, and progression, and its representation in the EHR,” Wu said.

To set such standards, the research team will work to determine what standardized information is needed to assure the earliest and most accurate reporting of the Parkinson’s diagnoses possible. Right now, Wu said, the registry is getting “a firehose of low-quality information.” A recent review showed that as many as 20% of people listed in the registry don’t have Parkinson’s.

“Sometimes, doctors who are not neurologists code PD just because the patient says they have it,” Wu added. “And in many cases of PD, there is a large degree of uncertainty about date of diagnosis reported from the EHR to the CPDR.”

An EHR is an electronic system used and maintained by healthcare systems to collect and store patients medical information. At each patient visit, the physician enters information about the patient’s history, symptoms, and diagnosis. Often, however, the way in which information is entered makes it hard for registries to obtain it.

Ultimately, the project seeks to improve the EHR interface by producing better data-collecting tools while making it easier for physicians to provide patient care. To that end, the research team will also add opportunities for patients to use questionnaires to supplement EHR information. The aim is to design the EHR so to allow the registry to import valid data without markedly disrupting a clinician’s interaction with a patient.

The overarching hope is that knowledge gained from a more accurate registry will lead to patient care. “We want to make the CPDR a driver for quality improvement and research for PD patients,” Wu said.