New Patient Database to Improve Parkinson’s Research

A new Parkinson’s disease living patient database will improve research into the disease by helping researchers investigate possible causes, develop better symptom management, assess the condition’s progress, and analyse the diversity of individual experiences of the disease.

The Howard Florey Institute and Parkinson’s Victoria have teamed up to establish the Parkinson’s Victoria Research Register (PVRR), a longitudinal study that will improve understanding of Parkinson’s disease (PD), the nation’s second most common, chronic neurological condition. Current estimates indicate that between 54,000 and 80,000 Australians are currently living with PD, with 25 new cases diagnosed every day.The register will facilitate faster and more effective drug development for a condition where medication is integral to symptom management.Prof Malcolm Horne from the Howard Florey Institute said the register would overcome difficulties associated with current research involving patients. “The symptoms and effect of PD vary greatly, and patients also vary in the course of the disease and their response to medication. This database will include these details, as well as information about genetics, DNA and other biochemical data,” Prof Horne said. “This type of information is invaluable for trials of new medications and for studying why people have the disease or have different severity of symptoms. “The clinical outcomes will be significant and open up new avenues of PD research, while also improving our understanding of the condition and the development of diagnostic testing.”When fully operational, the register will assist us in our search for a cure for this devastating brain disorder, which can affect any adult of any age,” he said.The register will consist of 300 participants whose condition, medical records and disease progression will be described in detail. A control group, matched on age and environment, ideally the partner of the participant, will also form part of the register. An announcement of when the register will be open for participants will be made in Signpost, the Parkinson’s Victoria newsletter, and online at www.parkinsonsvic.org.au in the coming months.To maintain the credibility and value of the register, strict selection criteria will be used and participants will be chosen to reflect recently diagnosed subjects, ranging through to those who have lived with the condition for 15 years or more. The register will encompass a range of demographics (age, ethnicity, postcode), and new participants will be recruited each year to ensure the register remains at around 300. Additional funding is currently being sought to ensure the longevity of the register and its associated research programs.(Source: Howard Florey Institute : September 2007)