Sharing data to speed up science

Teaming up and sharing data across national borders can help speed up the pace of discovery. That’s the logic behind a new database of neurodegenerative disease cohort studies launched by the EU Joint Programme for Neurodegenerative Disease Research (JPND). Professor Dag Aarsland, a leading expert in the fields of dementia with Lewy bodies and Parkinson’s disease, put the portal through its paces.

Why are cohorts important for neurodegeneration research?

In 2014, I led an international JPND-supported Working Group focused on solving some of the challenges of using cohorts – studies involving large groups of people—for research on dementia with Lewy bodies (DLB). Despite being the second most common form of neurodegenerative dementia, we know little about how the condition progresses. This information is important to inform diagnosis and research.

Our working group agreed that we need to combine data, collected in past and existing cohort studies, to define criteria for early diagnosis of DLB. To do this, we need a full view of what data is already out there.

I’m pleased to see that the JPND Global Cohort Portal includes cohorts in countries across Europe and beyond. In fact, after just a few minutes of exploring the JPND Portal, I identified a number of cohorts that I hadn’t heard of before and which may be useful in my research. This makes the portal just as useful as the National Institutes of Health’s database.

Could the portal help facilitate new collaborations?

Yes – the portal gives you key information about the cohort. This includes the variables collected, which are not always in the public domain. You also get contact details for each cohort. This means users can identify and contact people quickly for any given study.

That’s not to say that linking and pooling cohort data is simple. Data collection protocols at different centres vary, so we’ll need new strategies for combining clinical and biomarker data.

Nonetheless, researchers are increasingly willing and able to team up and share data, including across national borders. Doing so could significantly speed up the pace of discovery.

In addition to identifying existing data and possible new collaborations, is there any other way a researcher could use the portal?

 Cohorts are long and expensive undertakings, so we should make most of existing studies. At the same time, it’s possible that some studies are missing crucial data. Researchers can enrich these cohorts with new samples, tests and data collection methods.

For DLB, I think we’ll need new cohort studies – so we can better understand the longitudinal course of the disease. For example, combining data from different cohorts should help us develop possible early diagnosis criteria. We’ll then need to test these criteria in a new cohort study, specific to DLB.

 The JPND portal allows a user to search for cohorts based on a range of criteria, including study type, disease and country. You can then review, filter, compare and manipulate the data in different views. If a search of the portal shows that certain data doesn’t exist, it could strengthen the case for funding a new cohort.

In this context, I think that the JPND portal will be an important gateway to information on existing and missing cohort data. I see it becoming a go-to resource for researchers in the neurodegeneration field.