title: Data sharing in large research consortia: experiences and recommendations from ENGAGE.
abstract: Data sharing is essential for the conduct of cutting-edge research and is increasingly required by funders concerned with maximising the scientific yield from research data collections. International research consortia are encouraged to share data intra-consortia, inter-consortia and with the wider scientific community. Little is reported regarding the factors that hinder or facilitate data sharing in these different situations. This paper provides results from a survey conducted in the European Network for Genetic and Genomic Epidemiology (ENGAGE) that collected information from its participating institutions about their data-sharing experiences. The questionnaire queried about potential hurdles to data sharing, concerns about data sharing, lessons learned and recommendations for future collaborations. Overall, the survey results reveal that data sharing functioned well in ENGAGE and highlight areas that posed the most frequent hurdles for data sharing. Further challenges arise for international data sharing beyond the consortium. These challenges are described and steps to help address these are outlined.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Budin-Ljøsne
authors.forename: Julia
authors.initials: J
authors.lastname: Isaeva
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Tassé
authors.forename: Huei-yi
authors.initials: HY
authors.lastname: Shen
authors.forename: Mark I
authors.initials: MI
authors.lastname: McCarthy
authors.forename: Jennifer R
authors.initials: JR
authors.lastname: Harris
mesh_terms: D016208:Databases, Factual / Q000706:statistics & numerical data; D030541:Databases, Genetic / Q000706:statistics & numerical data; D005060:Europe; D023281:Genomics / Q000379:methods / Q000458:organization & administration / Q000592:standards; D006287:Health Planning Guidelines; D033181:Information Dissemination; D007391:International Cooperation; D017720:Molecular Epidemiology / Q000379:methods* / Q000458:organization & administration / Q000592:standards; D012958:Societies, Scientific / Q000592:standards