Mechanisms of support for rare cancers in France
The French National Cancer Institute (INCa) recently published their annual "Synthesis of oncogenetic activity 2013” which reviews the various mechanisms established to manage the issue of rare cancers in France as well as the propositions for the 2014-2019 French National Cancer Plan. This plan is built around three main themes: rare adult cancers, paediatric cancers (all of which are rare cancers) and hereditary forms of cancer. The incidence (number of new cases per year) used to define the rarity of cancer, according to the European consensus, is 6 new cases per 100,000 in the European population.
Rare adult cancers
Set up in 2009, the plan takes into account cancers with low incidence or cancers requiring highly specialised care due to the particular location of the cancer (for eg., uveal melanoma, peritoneal tumours), their occurrence in specific people (for eg., neoplasia in pregnant women), or for their complexity (for eg., soft tissue sarcoma, anaplastic oligodendroglioma). It aims to improve the diagnosis and the treatment of these cancers. To this end, twenty-two regional or interregional expert centre networks coordinated by a national expert centre were established. This organisation enables a systematic double reading of tumour biopsies (pathology) to improve diagnostic certainty and allow all patients to benefit from collegial and specialised care. Access to innovative treatments through the inclusion of patients in clinical trials is promoted. Finally, a major role in improving the knowledge of rare cancers and their treatment by producing recommendations and disseminating information to relevant parties is envisaged. Patient associations, and of course, Orphanet, play an active role towards improved diagnosis and treatment.
For more information on the specific treatment of rare cancers
Learn more about the specific organisation that supports rare adult cancers in France
Paediatric cancers
Even though all cancers in children and adolescents are rare (2500 new cases each year in France), it is the second cause of death for people under 14 and the third leading cause of death for 15-18 years. The management of paediatric cancers is organised through 47 health facilities and 7 interregional centres specialising in paediatric oncology and meet specific criteria in order to be identified as such. All patients benefit from multidisciplinary paediatric interregional cooperation which ensures that they receive high levels of expertise required to diagnose and treat the specificity of these pathologies. INCa has thus identified platforms requiring technical expertise or experience (hematopoietic stem cells, tumours of the musculoskeletal system, brain tumours, implementation of early trials and radiotherapy). The 3rd French National Cancer Plan (2014-2019) aims to:
- Improve the access of children, adolescents and young adults to innovation and research,
- Ensure comprehensive support beyond the care related to cancer so that everyday life can continue for the child and his family,
- And better prepare and monitor the child and family in the post-cancer period.
The tools provided by INCa to combat cancer afford prominence to patient organisations that are committed to support and provide information to patients and their families, but also in the quality of care and research.
To learn more
Hereditary forms of cancer and cancer genetics
In France, approximately 5% of cancers are associated with an inherited genetic disorder, which increases the predisposition of these individuals to cancer. All hereditary cancers are rare, the most common of which are breast cancer, ovarian cancer and Lynch syndrome. In France, oncogenetics consultations are organised through 126 clinical sites in 48 health facilities and 25 genetic laboratories. Synthesis oncogenetics activity that has just been published reports an increase in the activity of these consultations, which supports both the index case (in whom the deleterious mutation is identified) as well as the family. A 15% increase in consultations on new families was recorded, echoing a growing number of index cases being found.
Apart from the management of patients, 28 molecular genetic platforms also examine the genetic characteristics of tumours to offer a personalised care and targeted, innovative therapy for both rare and common cancers. For few cancers, such as gastrointestinal stromal tumour or glioblastoma, the detection of genetic abnormalities also provides access to a targeted therapy. In this context, the FSCA programme (Secure access to innovative targeted therapies) was set up to allow patients experiencing treatment failure and whose tumours have certain genetic abnormalities easier and safe access to clinical trials of novel therapies. The program, made possible through a partnership between INCa and MSNA (Agence française de sécurité sanitaire des produits de santé) is promising this in the context of rare cancers. The 3rd Cancer Plan will also implement a comprehensive analysis of genome sequencing with a goal of sequencing tumours from 50,000 patients by 2019. A national platform for genomics and data analysis of cancer will be created to fuel this research.
Read the summary of the 2013 French Oncogenetic Activity Report
Read the 2013 Activity Report of French Hospital Molecular Genetics Platforms