<abstract xmlns="http://www.w3.org/1999/xhtml"><p>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).</p><p>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.</p></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.

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

Children´s University Hospital Bratislava, 2nd Department of Pediatrics, Limbová 1, 83340 Bratislava,Slovak Republic

ORPHANET SR, Comenius University in Bratislava and Children´s University Hospital Bratislava, Medical Faculty, 2nd Department of Pediatrics, Slovakia

European Pharmaceutical Journal

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...

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

Publié en ligne: 20 avr. 2013

Pages: 10 - 15

DOI: https://doi.org/10.2478/afpuc-2013-0002

Mots clés
Orphanet, Slovakia, creation of Centres of Expertise

This content is open access.

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

Publié en ligne: 20 avr. 2013

Pages: 10 - 15

DOI: https://doi.org/10.2478/afpuc-2013-0002

Mots clésOrphanet, Slovakia, creation of Centres of Expertise

This content is open access.

Mots clés
Orphanet, Slovakia, creation of Centres of Expertise