{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T08:23:07Z","timestamp":1740126187817,"version":"3.37.3"},"reference-count":20,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2018,7,23]],"date-time":"2018-07-23T00:00:00Z","timestamp":1532304000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"European Union and the State of Hungary, co-financed by the European Social Fund","award":["T\u00c1MOP-4.2.4.A\/2-11\/1-2012-0001","T\u00c1MOP-4.2.2.A-11\/1\/KONV-2012-0031"],"award-info":[{"award-number":["T\u00c1MOP-4.2.4.A\/2-11\/1-2012-0001","T\u00c1MOP-4.2.2.A-11\/1\/KONV-2012-0031"]}]},{"name":"Portugal\/Hungary Bilateral Project FCT\/NKFIH","award":["T\u00c9T_16-1-2016-0093"],"award-info":[{"award-number":["T\u00c9T_16-1-2016-0093"]}]},{"name":"J\u00e1nos Bolyai Scholarship of the Hungarian Academy of Sciences (MTA) to O.V"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2018,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>For most rare diseases, which are often significantly under\u2010resourced, 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Websites of organizations funding research projects were identified and systematically checked. Projects were analysed by date, place, funder types, and research topics.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The analysis revealed that the total expenditure on Rett syndrome research was almost \u20ac70 million, allocated among 247 projects mostly performed in Italy and the United Kingdom. The main research sponsor was the European Commission.<\/jats:p><jats:p>Highlighting research trends and gaps, this work facilitates changes in rare disease research data management.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>This work demonstrates the feasibility of creating an EU\u2010based 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.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12595","type":"journal-article","created":{"date-parts":[[2018,7,23]],"date-time":"2018-07-23T08:59:53Z","timestamp":1532336393000},"page":"794-800","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Developing a database for Rett syndrome research performed in the European Union: A resource for researchers and stakeholders"],"prefix":"10.1111","volume":"44","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6782-9820","authenticated-orcid":false,"given":"Folahanmi Tomiwa","family":"Akinsolu","sequence":"first","affiliation":[{"name":"Department of Preventive Medicine, Faculty of Public Health University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eszter","family":"Balcz\u00e1r","sequence":"additional","affiliation":[{"name":"Faculty of Medicine University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"N\u00f3ra","family":"Kov\u00e1cs","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine, Faculty of Public Health University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tibor","family":"G\u00e1ll","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine, Faculty of Public Health University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9761-9595","authenticated-orcid":false,"given":"Mariann","family":"Harangi","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Faculty of Medicine University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8771-3975","authenticated-orcid":false,"given":"Orsolya","family":"Varga","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine, Faculty of Public Health University of Debrecen  Debrecen Hungary"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2018,7,23]]},"reference":[{"key":"e_1_2_6_2_1","unstructured":"Associazione Italiana Rett. 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