Developing a database for Rett syndrome research performed in the European Union: A resource for researchers and stakeholders

Child: Care, Health and Development
Folahanmi Tomiwa AkinsoluOrsolya Varga

Abstract

For most rare diseases, which are often significantly under-resourced, sufficient information on funding landscape is missing, which may prevent effective use of research resources and be an obstacle to making effective decisions on research. The objective of this research was to create a database of Rett syndrome research projects carried out in the European Union (EU) and to provide a research landscape analysis. Websites of organizations funding research projects were identified and systematically checked. Projects were analysed by date, place, funder types, and research topics. The analysis revealed that the total expenditure on Rett syndrome research was almost €70 million, allocated among 247 projects mostly performed in Italy and the United Kingdom. The main research sponsor was the European Commission. Highlighting research trends and gaps, this work facilitates changes in rare disease research data management. This work demonstrates the feasibility of creating an EU-based research database on Rett syndrome projects. It provides a source of information on research development which is useful for individuals, organizations and key players in the private and public sector to make progressive decisions on Rett syndrome res...Continue Reading

References

Dec 15, 2010·Annals of Neurology·Jeffrey L NeulUNKNOWN RettSearch Consortium
Jan 20, 2012·Nature·Jim Giles
Aug 30, 2012·BMC Health Services Research·Claire de OliveiraMurray D Krahn
Apr 24, 2013·Biochimica Et Biophysica Acta·F Stehr, M Forkel

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