Orphanet – Information, Education and Expert Centres for Rare Diseases / Orphanet – informovanosť, vzdelávanie a špecializované centrá starostlivosti o pacientov so ZCH

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Abstract

The paper briefly describes the role of Orphanet as an informational and educational source for rare diseases. Most attention is given to the Centres of Expertise and European Reference Networks. The authors suggest an easy procedure how to get the basic data about the readiness of the clinics to be recognised for Centres of Expertise at the national level. EUCERD recommendations on quality criteria for centres of expertise are introduced. The coordinators of the potential Centres of Expertise should be contacted and asked to fill in the questionnaire designed to check whether the centre matches the EUCERD recommendations or not. In order for the process to be transparent, the selection criteria of expert resources are listed on national website (www.orphanet.sk).

The analysis of the questionnaires has to be carried out at the national level, to map the basic data about the current status. One questionnaire per department or clinic shall be filled in order to allow the evaluation. Clinics will be divided in two groups the ones which achieved the threshold and could be recognised as Centres of Expertise at the National level and the ones which need to be further monitored to reach the threshold.

Abstract

Práca stručne charakterizuje úlohu ORPHANETU ako významného vzdelávacieho a informačného portálu o zriedkavých chorobách. Najväčšia pozornosť je venovaná expertíznym centrám a Európskej referenčnej sieti. Autori navrhujú jednoduchý postup získania základných informácií o pripravenosti pracovísk pre získanie národného štatútu expertízneho centrá. Navrhujú osloviť koordinátorov potenciálnych expertíznych centier aby vyplnili dotazník vypracovaný podľa EUCERD kritérií. Pre transparentnosť procesu výberové kritériá pre expertízne centrá sú uvedené nanárodnej stránke ORPHANET (www.orphanet.sk).

Dotazníky sa budú analyzovať na národnej úrovni a prispejú k zmapovaniu aktuálnej situácie. Každé pracovisko vyplní len jeden dotazník. Pracoviská budú rozdelené do dvoch skupín na tie ktoré dosiahli potrebný počet bodov a možno im udeliť štatút expertízneho centra na národnej úrovni a na tie, ktoré treba naďalej sledovať, kým dosiahnu potrebný počet bodov.

References
  • COUNCIL RECOMMENDATION of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) Off J Eur U C 151:7 - 10. (http://eurlex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF). Accessed February 20 2013.

  • Directive (EC 2011/24/EU) of the European Parliament and of the Council on the application of patients' rights in cross-border health care. (http://eurlex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:EN:PDF). Accessed February 20 2013.

  • EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States, 24 October 2011. (http://www.eucerd.eu/?post_type=document&p=1224). Accessed February 20 2013.

  • Rodwell Ch, Aymé S. and Bushby K.: Scope of centres of expertise for rare diseases in European countries where they exist. Orphanet Journal of Rare Diseases 2012, 7, (Suppl 2):A5. Accessed February 20 2013.

European Pharmaceutical Journal

Acta Facultatis Pharmaceuticae Universitatis Comenianae (formerly)

Journal Information


CiteScore 2016: 0.28

SCImago Journal Rank (SJR) 2015: 0.195
Source Normalized Impact per Paper (SNIP) 2015: 0.202

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