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:
- Paranasal sinus cancer
- Thymoma and thymic carcinomas
- Survival of European adolescents and young adults diagnosed with cancer in 2000-07: population-based data from EUROCARE-5
- Childhood medulloblastoma
- Systemic approach to malignant pleural mesothelioma: what news of chemiotherapy, targeted agents and immunotherapy?
- Accreditation for centers of sarcoma surgery
- Survival patterns in lung and pleural cancer in Europe 1999-2007: Results from EUROCARE-5 study
- Survival of male genital cancers (prostate, testis and penis) in Europe 1999-2007: Results from the EUROCARE-5 study
- Survival in patients with primary liver cancer, gallbbladder and extrahepatic biliary tract cancer and pancreatic cancer in Europe 1999-2007: Results of EUROCARE-5
- Methodological aspects of estimating rare cancer prevalence in Europe: the experience of the RARECARE project.
- Rare cancers an emerging issue in Europe and in Poland.
- Rare neuroendocrine tumors in Europe.
- The burden of rare cancer in Italy.
- Descriptive epidemiology of sarcomas in Europe: Report from the RARECARE project.
- Carcinoma of endocrine organs: Results of the RARECARE project.
- Epidemiology of glial and non-glial brain tumours in Europe
- Embryonal cancers in Europe.
- Incidence, prevalence and survival of patients with rare epithelial digestive cancers diagnosed in Europe in 1995–2002
- Rare thoracic cancers, including peritoneum mesothelioma.
- Descriptive epidemiology of malignant mucosal and uveal melanomas and adnexal skin carcinomas in Europe
- Rare cancers of the head and neck area in Europe
- Incidence and survival of rare urogenital cancers in Europe
- Invasive extramammary Paget’s disease and the risk for secondary tumours in Europe
- Burden of testicular, paratesticular and extragonadal germ cell tumours in Europe
- Rare cancers are not so rare: The rare cancer burden in Europe
- Prognoses for head and neck cancers in Europe diagnosed in 1995-1999: a population-based study.
- European disparities in malignant digestive endocrine tumours survival
- Major and minor salivary gland tumors
- The Burden of Rare Cancers in Europe
- Adult neuroectodermal tumors of posterior fossa (medulloblastoma) and of supratentorial sites (stPNET)
- Survival from salivary glands adenoid cystic carcinoma in European populations
- Survival of European children and young adults with cancer diagnosed 1995-2002
- Survival for ethmoid sinus adenocarcinoma in European populations
- Human Papillomavirus in HNSCC: A European Epidemiologic Perspective
- Survival in patients with uveal melanoma in Europe.
- Glioblastoma in adults.
- Incidence of Uveal melanoma in Europe
- Nephroblastoma in adults (incidence and survival)
- Rare cancers survival (survival analysis on a selection of rare cancers)
RARECARE results were presented at major national and international conferences, patients association meetings and/or conferences. The list of conferences follow:
- European Network of Cancer Registries (ENCR) Meeting . 19-20 September 2012 (oral presentation) http://www.iacr2012.com
- Congress of the Group of Registries of the Latin language countries (GRELL). 16-18 May, 2012 (poster) https://sites.google.com/site/grellteste
- Workshop on Rare Paediatric Tumours, November 22-23 2010, Centro Superior de Investigación en Salud Pública, Valencia
- International Association of Cancer Registries (IACR). Annual meeting 12-14th 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/
- 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
- 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/
- 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
- 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
- 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
- Congress of the Group of Registries of the Latin language countries (GRELL). 12-14 May, 2010 Toledo, Spain.(Oral presentation) https://sites.google.com/site/grellteste
- 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
- 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
- 3rd International Cancer Control Congress (ICCC3). “International Collaborations”. 8-11 November, 2009 Cernobbio, Como, Italy. (Oral presentation):http://www.cancercontrol2009.com/index.html
- XXVII Reunión de la Sociedad Española de Epidemiología”.28-30 October, 2009 Zaragoza, Spain. (Oral presentation): http://reunionanualsee.org/2009/bienvenida.html
The RARECARE project is linked with EUCERD: European Committee of Experts on Rare Diseases and its working groups.
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.