Study Rationale:
Effective treatments for the symptoms of Parkinson’s exist, but none slow its progression. Inability to measure or predict future progression are major obstacles to resolve. Achieving these will pave the way to better design of clinical trials aimed at slowing down Parkinson’s. The UK is home to more than 10 previously funded, high-quality studies. Individually they are unable to address pressing questions about progression. Together they cover the earliest stages of disease, even before diagnosis, right up to the most advanced stages. Moreover, they include patients and participants recruited from around the UK, making them representative of the range of people that are affected.
Hypothesis:
PC3 will produce an enormous resource combining the data from individual studies, along with linked healthcare records and death certificates. The resource will be made available to the research community and will enable us to answer pressing questions related to Parkinson’s progression at all stages, which will help us design better clinical trials.
Study Design:
First, we will bring all the data from these studies into one place and "harmonise" it for analysis. This will create a unique set of data covering all stages of Parkinson’s. Next, we will connect this research data to information held in healthcare records through a process called "linkage." Having health record information from the past and into the future, will dramatically enhance the value of the research data that has already been collected from participants. Often as people get older, they drop-out of research studies. This drop-out creates bias because it means that only the healthiest people continue to participate. Through linkage, we will be able to find out what happens to people in the future even if they stop taking part in the research study. We will make the combined, linked dataset available for research and support researchers to use the data and develop important questions.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
This is a unique opportunity to combine data from all stages of Parkinson’s and combine it with routinely collected health records data. We expect that this resource will be widely used to answer crucial questions about Parkinson’s that cannot be answered using normal studies, and it will help us develop trials that incorporate meaningful outcomes for patients.
Next Steps for Development:
Harmonisation on this scale has been done, but linkage to healthcare records is a big challenge. Based on our experience, it is a challenge that we believe we will overcome and once completed, this will be a valuable resource for the research community.