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Sharing data to speed up dementia research

By studying large groups of people over time, researchers are trying to spot early signs of diseases, including dementia. As large studies are huge undertakings it makes sense to check what’s already out there before setting up a new one – but this is no easy task. A new tool aims to help by collecting neurodegenerative disease cohort studies in one place. Professor Dag Aarsland, a leading dementia researcher, put the JPND Global Cohort Portal through its paces.

I study a specific type of dementia called dementia with Lewy bodies. Despite being the second most common form of neurodegenerative dementia, we know little about how it progresses. This information is important to inform diagnosis and research.

Collating existing data

In 2014, I led an international working group supported by the EU Joint Programme for Neurodegenerative Disease Research (JPND). It focused on solving some of the challenges of using cohorts – studies involving large groups of people – for research on dementia with Lewy bodies.

Our working group agreed that we need to combine data, collected in past and existing cohort studies, to define criteria for early diagnosis of this common type of dementia. To do this, we need a full view of what data is already out there, something that the new JPND Global Cohort Portal offers.

I’m pleased to see that the portal includes cohorts in countries across Europe and beyond. After just a few minutes of exploring, 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 ClinicalTrials.gov database.

Speeding up discovery science

The portal gives you key information about each cohort. This includes the variables collected, which are not always in the public domain. You can also view contact details for each cohort allowing you to get in touch with 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.

Spotting the gaps

Cohorts are long and expensive undertakings, so we should make the most of existing studies. At the same time, it’s possible that some studies are missing crucial data. By teaming up, researchers can share ideas of how to enrich these cohorts with new samples, tests and data collection methods. And if a search of the portal shows that certain data doesn’t exist, it could strengthen the case for funding a new cohort.

For dementia with Lewy bodies, 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 this type of dementia.

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.

 

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