Page 34 - CIBERER-2015-eng

Platforms
ORPHANET
The activities performed this year by the Orphanet Platform are as follows:
COLLECTION AND UPDATING OF DATA:
At the end of 2015, the total number of Spanish activities reflected in the Orphanet database was as shown below:
Total Spanish activities in 2015
Specialised clinical consultations 360 Patients’ associations 277
Diagnostic tests
Clinical trials 921 Research projects 380 Registries / Biobanks 68
TRANSLATIONS:
A total number of 100 abstracts of diseases and 179 names of new Rare Diseases (RD) have been translated into Spanish and uploaded onto the web page, along with the modification of 613 names of RD.
In order to contribute to the translation of the Or- phanet Encyclopaedia for Patients, a number of texts containing a great deal of information on many RD in language accessible to all readers have been translated and six articles have been translated and published in 2015.
FURTHERING THE ACTIVE PARTICIPATION OF THE SCIENTIFIC COMMITTEE (SC)
In 2015 the members of the SC have been in- volved in different tasks such as the review of summaries of diseases, of clinical guides and the directories of expert centres, as well as in replies to patients’ enquiries.
FURTHERING THE COMMUNICATION AND DIS- SEMINATION PLAN:
• Participation in the event entitled “Rare Disease Day 2015” at Valencia University.
• Translation and production of dissemination material on the Orphanet.
• Sponsorship of the III Jornadas Científicas de Técnicos Superiores Sanitarios, Barcelona 5-7 June.
• ContributionstotheOrphanewsEuropenewslet- ter.
• Maintenance of the Orphanet Spain web site: the web page of Orphanet-Spain, created by the Spanish team of documentarists, published roughly 70 news items over 2015. In cooperation with patents’ associations, it publicised events on RD in Spain and gave access to documents in Spanish on these diseases, such as the differ- ent guides compiled in “The Orphanet-Spain En- cyclopaedia” or specific documentary resources.
• In cooperation with the communication depart- ment of the CIBERER, the news items published on the Orphanet-Spain web site further its visibil- ity through its Twitter service. The most promi- nent ones dealing with the Orphanet portal itself are published on the CIBERER web site and in its institutional newsletter.
FURTHERING THE RESULTS SHARED BY CIBER- ER-ORPHANET, WORKING TO ENSURE THAT THE RELATIONSHIP BETWEEN THE TWO IN- STITUTIONS REPRESENTS ADDED VALUE FOR THEIR RESPECTIVE PROJECTS.
• The list of rare diseases which CIBERER works on been reviewed and updated.
• Cooperation has been provided for the Pa- tients’ Care Service in handling enquiries and requests for information by those affected.
• Cooperation with the managers of CIBERER in preparing proposals for projects in which the Orphanet is involved.
• The list of diseases assigned to the projects listed in the MAPER has been reviewed.
• Cooperation in the different areas (Research Programmes, PdI) of the CIBERER in updating activities in the CIBERER database that have been dumped in Orphanet.
7.860
34 I Annual report 2015 I CIBERER