The French COMETE-Cancer network for adrenal cancer: 10 years of activity as part of a national plan for clinical care of rare cancers
Résumé
P826
The French COMETE-Cancer network for adrenal cancer: 10 years of activity as part of a national plan for clinical care of rare cancers
Introduction
The French National Institute of Cancer (INCa) launched supported by the Ministry of Health in 2008 a program for the recognition of national networks for the management of rare cancers. Among the 23 selected networks COMETECancer was recognized by INCa in 2009 for Adrenocortical carcinoma (ACC) and malignant pheochromocytoma/paraganglioma (MPP). At that time 60–120 new ACC/year and 30 new MPP/year were expected at the national level.
Aim
To describe the general activities of COMETE-cancer after 10-years of activity.
Materials and methods
INCa list 7 tasks for the national rare cancer networks: 1) Expertise: double reading of tumor samples, Referral National Multisciplinary Staff (RNMS); 2) Care practice: national best practice guidelines release; 3) Referral: patient access to highly specialized/innovative treatments (clinical trial); 4) Observation: exhaustive recording of national cases in registries; 5) Clinical and translational
research; 6) Healthcare professional training; 7) Role of patient associations. The
French COMETE-K network is coordinated by two-sites Centers (Cochin and
Gustave Roussy). Ten Regional Experts Centers have been recognized for a
national geographical coverage.
Results
A double reading is done in about 200 cases of ACC/MPP tumor samples/year. A RNMS is organized twice a month (web based system): about 170 ACC and MPP patients/year are discussed. The coverage rate of ‘new’ patients reviewed in RNMS/‘estimated’ total number cases was 68%. The consistency between treatment proposed in RNMS and treatment administered was of 84%. Since
2010, 958 ACC and 384 MPP have been entered in the ENSAT database. Two National best practice guidelines for ACC/MPP were released. About 70 ACC/MPP have been referred to the COMETE-Cancer centers for highly specialized and innovative treatment (phase II-III trial, radiofrequency/cryotherapy, liver chimioembolisation). COMETE-Cancer participated in two international trials (ADIUVO in ACC and FIRSTMAPP in MPP) and more than 20 translational studies. Every year more than 500 healthcare professional (student, endocrinologists, surgeons, pathologist, oncologists) are trained. Moreover, it strongly collaborates with the patients ‘Association Surre´nale’ by writing specific documents on the clinical ACC/MPP management.
Conclusions
COMETE-cancer has led to a homogenous national organization for clinical care of ACC and MPP. The RNMS proved to be very efficient for that. Links with the ENSAT, ENDO-ERN and EURACAN networks will allow further progress at the European level.
DOI: 10.1530/endoabs.63.P826