A previous EU funded project based on population-based cancer registries and focused on rare cancer survival produced results in terms of dissemination in the scientific literature and scientific meetings. Ophthalmologists, paediatricians, gastroenterologists, oncologists together with epidemiologists have led and developed analyses about the following rare cancers:

Published Articles

• Prognoses for head and neck cancers in Europe diagnosed in 1995-1999: a population-based study.
• The burden of rare cancers in europe
• Major and minor salivary gland tumors
• European disparities in malignant digestive endocrine tumours survival
• Survival for ethmoid sinus adenocarcinoma in European populations
• Adult neuroectodermal tumors of posterior fossa (medulloblastoma) and of supratentorial sites (stPNET)
• Survival of European children and young adults with cancer diagnosed 1995-2002
• Survival from salivary glands adenoid cystic carcinoma in European populations
• Human Papillomavirus in HNSCC: A European Epidemiologic Perspective
• Cholangiocarcinoma.
• Survival in patients with uveal melanoma in Europe.
• Glioblastoma in adults.
• Oligodendroglioma.
• Nephroblastoma in adults (incidence and survival)
• Incidence of Uveal melanoma in Europe
• Rare cancers survival (survival analysis on a selection of rare cancers)

Conference List

RARECARE results were presented at major national and international conferences, patients association meetings and/or conferences. The list of conferences follow:

• Fourth Eastern European Conference for Rare Diseases and Orphan Drugs. “Together for integrative approach to Rare Diseases”. 13-14 June, 2009 Plovdiv, Bulgaria. (Oral presentation):  http://www.raredis.org/modules/news/article.php?storyid=716
  
  
• XXVII Reunión de la Sociedad Española de Epidemiología”.28-30 October, 2009 Zaragoza, Spain. (Oral presentation): http://reunionanualsee.org/2009/bienvenida.html
  
  
• 3rd International Cancer Control Congress (ICCC3). “International Collaborations”. 8-11 November, 2009 Cernobbio, Como, Italy. (Oral presentation): http://www.cancercontrol2009.com/index.html
  
  
• International Congress on Rare Diseases and Orphan Drugs. 22-25 February, 2010 Rome,Italy. (Oral presentation): http://www.iss.it/cnmr/appu/cont.php?id=1450&lang=1&tipo=56
  
  
• Annual Congress of the Italian Association of Cancer Registries (AIRTUM). 21-23 April, 2010 Sabaudia, Latina, Italy. (Oral presentation): http://www.registri-tumori.it/cms/?q=node/1534
  
  
• European Society of Surgical Oncology (ESSO). Annual meeting. 15-17 September 2010.  Bordeaux, France. (Oral presentation): http://www.essoweb.org/eursso/congresses-a-courses/essobiennialcongress/esso-2010.html
  
  
• Netherlands Epidemiology conference (WEON). 10-11th June 2010 Nijmegen, the Netherlands (poster): http://www.weon.nl/
  
  
• Association of Nordic Cancer Registries (ANCR). 9-11th June 2010 Faroe Islands, Denmark (poster): http://www.synergi.fo/2010/ANCR/index.htm
  
  
• The United Kingdom Association of Cancer Registries (UKACR) meeting 17-18th June 2010 Birmingham, England (poster): http://www.ncin.org.uk/about/conference/2010.shtml
  
  
• Guidelines International Network Conference 2010 GIN 25-28th August Chicago, USA (poster - Sonja Kersten on behalf of Jan Maarten van der Zwan): http://www.gin2010.org/
  
  
• International Association of Cancer Registries (IACR). Annual meeting12-14th October 2010, Japan (Abstract accepted for poster presentation): http://www.iacr.com.fr/
  
  
• European Society for Medical Oncology (ESMO.) Annual Meeting. 8-12 October 2010 Milan, Italy. (Abstract accepted for oral presentation): http://www.esmo.org/

 

The RARECARE project is linked with the European Rare Diseases Task Force and its working groups.

The RARECARE project has contributed to the EU public consultation on rare diseases with a comment on the rare cancer definition.
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The RARECARE project is linked with other population-based cancer registries based projects:

• the EUROCARE project, estimating survival of cancer patients in Europe; the majority of cancer registries involved in EUROCARE also accepted to participate in RARECARE
• the HAEMACARE project, (Cancer Registry based Project on Haematological Malignancies) contributing to the definition of rare haematological tumours and its standardisation among registries

The RARECARE project is also related with the EUROCHIP project, the European Cancer Health Indicators Project. All the indicators produced by RARECARE will be available for EUROCHIP. In order to interpret possible disparities among European regions or countries, the macro-indicators made available by EUROCHIP will be evaluated within RARECARE.

This section has been interpreted as an overview on activities related to the project that has been carried out until now, such as links to other projects, publications and contributions on rare cancer issues.