20.11.2012 | Veranstaltungen

Workshop zu Seltenen Erkrankungen in Rom

Unterzeile Meldung zu Workshop Rom


Im Rahmen des Projektes EPIRARE (European Platform for Rare Disease Registries) findet am 8. und 9. Oktober 2012 ein Internationaler Workshop zum Thema "Rare Diseases and Orphan Drug Registries" in Rom statt.Die Veranstaltung ist offen für alle Interessierten und die Teilnahme ist kostenlos.Veranstaltungssprache ist Englisch. Die Anmeldung erfolgt online und ist bis 31. Juli möglich: http://it.surveymonkey.com/s/International_Workshop_Registration Aus der Einladung des Veranstalters: "The meeting is aimed to share different experiences in the registration of rare diseases, including rare cancers and malformations, and to highlight the strengths and opportunities of linking different registration activities, including registries, biobanks and orphan drug post-marketing surveillance. The Meeting is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises."Zusätzliche Information für Teilnehmer aus dem Bereich Wissenschaft und Forschung:"Abstracts are welcome on the following topics: 

  • contribution of registries to the advancement of the knowledge about the natural history, epidemiology and pathogenesis of rare diseases, and of patient care and quality of life;
  • practical applications of registries (patients’ support networks, recruitment of patients in clinical trials, social and health service planning, integration with biobanks and neonatal screening);
  • Registries management, strategies for financial sustainability, quality assurance, compliance with ethical and legal requirements, ownership and accessibility of data, patients’ participation;
  • impact of e-health initiatives, new communication technologies and social networks.

More than one abstract can be submitted. Please, submit your abstract at:

http://it.surveymonkey.com/s/workshop_Abstract  Abstract submission: July 31, 2012. No abstracts will be accepted after this date.Notification of abstract acceptance: August 31, 2012“