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Endocrine Abstracts (2019) 63 P826 | DOI: 10.1530/endoabs.63.P826

1Cochin Hospital, Paris, France; 2Hôpital Haut-Leveque, Bordeaux, France; 3CHU Grenoble, Grenoble, France; 4CHU Angers, Angers, France; 5CHU Strasbourg, Strasbourg, France; 6CHU Toulouse, Toulouse, France; 7CHU Rouen, Rouen, France; 8CHU Dijon, Dijon, France; 9IPC Cancer, Marseille, France; 10CHRU Lille, Lille, France; 11Institut Gustave Roussy, Villejuif, France.


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 COMETE-Cancer 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 Surrénale’ 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.

Volume 63

21st European Congress of Endocrinology

Lyon, France
18 May 2019 - 21 May 2019

European Society of Endocrinology 

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