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Information Technology, Medical Health Aged Care

Enhancing scientific discovery through improved data access

Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney 3 mins read

Australian researchers from UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA) have enabled easier access to international research data to support scientific discovery.

 

With an increase in the global burden of dementia and an anticipated rise from 55 million people living with dementia to almost 140 million by 2050, expediting research outcomes has become an international priority. To help facilitate this, data repositories have become increasingly important as more emphasis has been placed on open science practices and data sharing.

 

However, a major challenge for researchers is being able to source relevant data that meets their specific research interests or needs. Standardly and particularly for multi-study research, applying to access different datasets usually goes hand in hand with complicated requirements as well as extensive administration and waiting periods. Upon approval, substantial efforts of data harmonisation are usually required due to inconsistent data structures and labelling conventions, and harmonised datasets are hardly ever reused.

 

To address these problems, researchers at Centre for Healthy Brain Ageing (CHeBA) have created a new tool to improve data access and ultimately increase the potential for new discoveries, with the development published in the Journal of Open Source Software.

 

The lead creator of the Data Repository Explorer, Rory Chen, who is a data scientist with Dementias Platform Australia at CHeBA, says that the app is designed to enable easier access to research data held in repositories.

 

“DataRepExp is an open-source R Shiny application developed to improve access to research data,” says Chen. “The application displays standards metadata across multiple studies including availability by categories – such as demographics, medical history, imaging data and genomic data – to allow high-level comparison.”

 

“We found that many data repositories do not provide comprehensive metadata, nor centralised tables for comparison,” says Chen. “Our new app will provide more flexibility and functionality at a fraction of the cost.”

 

The improvement in public access of data comes with rich metadata for findability and a set of commonly used variables identified as being of broad interest to dementia research. It also has an interactive visualisation dashboard for accessibility, standardisation and harmonisation for data interoperability and reusability. 

 

The new tool was inspired by the world’s largest portal for use in dementia research led by Dementias Platform UK (DPUK), which brings together records of over 3 million people in a free-to access resource.

 

Research Manager at CHeBA and co-author on the paper, Dr Vibeke Catts, says that the new tool is a timely development.

 

“With 10 billion spent on health and medical research in Australia annually and the increased need for large sample sizes for meaningful analyses, researchers are keen to share their data for maximum benefit for the sector and the broader community. This tool can be readily implemented by a broad range of data repositories, making the data far more accessible and usable.”

 

The new tool also has a number of features including the capacity to explore and run preliminary analysis from participants that match certain criteria.

 

“In addition, it provides features to export reports and aggregated results for data access application purposes,” says Chen.

 

The exported reports can then be used when submitting a single centralised data access application form for accessing data from multiple studies through the DPAU Data Portal.

 

Co-Director of CHeBA Professor Perminder Sachdev AM says, “This fine user-friendly tool developed by Rory Chen will make it easier for researchers to search the wealth of data available on Dementias Platform Australia to identify and request data from studies that best suit their research question.  It is one further step by CHeBA researchers to make data FAIR and accessible to researchers from all over the world, hence boosting dementia and ageing research.”

 

 

Funding - This work is supported by grants from the National Institute on Aging/ National Institute of Health (NIA/NIH) [1RF1AG057531-01] and the Medical Research Council [MRC/T0333771].

 

 

 

 


Contact details:

 

Heidi Douglass, Centre for Healthy Brain Ageing - 0435 579 202

h.douglass@unsw.edu.au

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