Data sharing in large research consortia: experiences and recommendations from ENGAGE

Area of Science:

• Genetics
• Epidemiology
• Bioinformatics

Background:

• Data sharing is vital for modern research and mandated by funders.
• International research consortia face unique data sharing challenges.
• Factors influencing data sharing within and between consortia are not well-documented.

Purpose of the Study:

• To investigate factors hindering and facilitating data sharing within the European Network for Genetic and Genomic Epidemiology (ENGAGE).
• To identify specific challenges encountered in intra-consortia, inter-consortia, and broader scientific community data sharing.
• To gather lessons learned and recommendations for improving future data sharing practices.

Main Methods:

• A survey was conducted among participating institutions within the ENGAGE consortium.
• The questionnaire collected information on experiences, hurdles, concerns, and lessons learned regarding data sharing.
• Data analysis focused on identifying common challenges and successful aspects of data sharing.

Main Results:

• Data sharing within ENGAGE generally functioned well.
• Specific areas posing frequent hurdles to data sharing were identified.
• International data sharing beyond the consortium presented additional, distinct challenges.

Conclusions:

• While data sharing within ENGAGE was largely successful, targeted improvements are needed.
• Addressing identified hurdles can enhance data sharing efficacy.
• Strategies are outlined to overcome challenges in international data sharing for research consortia.