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

Akinsolu, Folahanmi Tomiwa and Balczár, Eszter and Kovács, Nóra and Gáll, Tibor and Harangi, Mariann and Varga, Orsolya (2018) Developing a database for Rett syndrome research performed in the European Union: A resource for researchers and stakeholders. Child: care, health and development, 44 (5). pp. 794-800. ISSN 1365-2214

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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.

Item Type: Article
Subjects: R Medicine / orvostudomány > RA Public aspects of medicine / orvostudomány társadalmi szerepe > RA0421 Public health. Hygiene. Preventive Medicine / közegészségügy, higiénia, betegség-megelőzés
R Medicine / orvostudomány > RJ Pediatrics / gyermekgyógyászat > RJ101 Child Health. Child health services / gyermekvédelem
Depositing User: Dr Varga Orsolya
Date Deposited: 30 Sep 2018 05:41
Last Modified: 30 Sep 2018 05:41

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