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

Folahanmi Tomiwa Akinsolu, Eszter Balczár, Nóra Kovács, Tibor Gáll, M. Harangi, Orsolya Varga

Research output: Contribution to journalArticle

Abstract

Background: 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. Method: Websites of organizations funding research projects were identified and systematically checked. Projects were analysed by date, place, funder types, and research topics. Results: 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. Conclusion: 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 research.

Original languageEnglish
Pages (from-to)794-800
Number of pages7
JournalChild: Care, Health and Development
Volume44
Issue number5
DOIs
Publication statusPublished - Sep 1 2018

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Keywords

  • project databases
  • rare diseases
  • research support
  • Rett syndrome

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Public Health, Environmental and Occupational Health

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