Abstract
This work aims to prospectively record all primary central nervous system tumors (PCNST), in France, for which histological diagnosis is available. The objectives are to create a national registry and a network to perform epidemiological studies, to implement clinical and basic research protocols, and to harmonize the healthcare of patients affected by PCNST. Following a feasibility study, including an estimate of the gross incidence of PCNST (15.8/100,000 person-years) in France, all French neuropathology and neurosurgery departments decided to participate in the program. For each patient, the neurosurgeon and the neuropathologist complete a data file containing socio-demographic, clinical, radiologic and anatomopathologic information. The Tumor Registry from Herault is authorized to compile the data files with personal identifiers. In 2.5 years, 10,093 cases of newly diagnosed PCNST have been recorded. Tumor resections were performed in 75.3%, while biopsies accounted for 24.7%. Histological diagnoses included glioma (49.6%), other neuroepithelial tumors (3.8%), meningioma (30.9%), neurinoma (8.7%), lymphoma (2.9%) and others (4.1%). Cryopreservation was reported for 2,261 PCNST specimens. Clinical and radiological aspects were also recorded. Preliminary results are encouraging and stimulating for the long-term goal of creating a National Registry and a National Network for patients affected by PCNST. To our knowledge, this is the first European databank dedicated to PCNST, with collection of clinical, radiological and histological data (including cryopreservation of the specimen). The creation of this registry and this database may have major clinical and fundamental implications.
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Acknowledgments
The authors thank Jennifer M. Propp, Bridget J. McCarthy, Carol Kruchko and the Central Brain Tumor Registry of United States for their assistance and comments in reviewing this work. The authors wish to acknowledge all the doctors and professors who helped and completed the Card of the Record of PCNST in France: Abilahoud G., Achim V., Adle-Biasette H., Aesch B., Aghakhani N., Akhaddar A., Al Hallak R., Albagnac V., Alfieri A., Algros M.-P., Ali Benali M., Allaoui M., Alliez B., Amat C., Amat D., Amlashi A., Aouad N., Arbez-Gindre F., Arbion F., Assaker R., Aubriot Lorton M.-H., Auque J., Autricque A., Auvigne I., Averous G., Baglin A.-C., Baldet P., Barat J.-L., Baron M.-H., Bataille B., Bayram M., Bazin A., Beauchesne P., Beaudic Y., Beaurain J., Bedossa P., Bedou G., Bellocq J.-P., Bellow F., Ben Hamouda H., Benabid A.-L., Benezech J., Bergemer Fouquet A., Bernard C., Bernard F., Bernard M.-H., Bernier M., Berthelot J.-L., Besson G., Beuvon F., Billant J.-B., Billotet C., Bioulac Sage P., Bizette C., Blanc J.-L., Blanquet A., Blond S., Blondet E., Boetto S., Boissonnet H., Bonneau C., Bord E., Borha A., Bouali I., Bougeard R., Bouillot P., Bourgeois P., Bousigue J.-Y., Bousquet C., Bousquet P., Bouvier C., Boyer P., Brambilla E., Branquet D., Brassier G., Broche C., Brousse N., Brousset P., Bruniau A., Brunon J., Cabal P., Cahn V., Caire F., Calvet P., Camo J., Camparo P., Carloz E., Carnin C., Carpentier A., Caserio-Schonemann C., Cassagnau E., Castera D., Cathelineau D., Caulet-Maugendre S., Caveriviere P., Cazals-Hatem D., Chabane A., Chapon F., Charpin Taranger C., Chatel M., Chatelain D., Chaynes P., Chazal J., Chenard M.-P., Cherie-Challine L., Chevrier A., Chinot O., Choukri M., Chretien F., Chrétien X., Cioloca C., Civit T., Colin P., Colnat S., Colombat M., Comoy J., Cornelius J., Costa K., Costes Charlet N., Coubes P., Coulbois S., Couvelard A., Cremades, Cretin J., Cuillere P., Czorny A., Dam Hieu P., Darasse D., Darrouzet V., Daumas-Duport C, Daures J.-P., Dautheribes M., David P., De Germay B., De Soultrait F., Debono B., Decq P., Degott C., Delage Corre M., Delannes M., Delattre J.-Y., Delhaye M., Delisle M.-B., Delmas J.-M., 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P., Guarnieri J., Guegan Y., Guettier C., Gueye E., Guillou P.-J., Guy G., Guyotat J., Haddad E., Haegelen C., Hallacq P., Hamlat A., Hanzen C., Hassoun J., Hauw J.-J., Hayek G., Heitzmann A., Hennequin V., Heymans D., Hladky J.-P., Hoang-Xuan K., Hoffstetter S., Huot J.-C., Iakolev G., Irthum B., Jacquet G., Jadaud E., Jan M., Jouanneau E., Joud A., Jourdan F., Jouvet A., Justrabo E., Kalamarides M., Kalifa C., Kantelip B., Kantor G., Katranji H., Kehrli P., Kemeny J.-L., Keravel Y., Kerdraon R., Kerr C., Khalfallah M., Khalil T., Khouri K., Khouri S., Kirova Y.M., Klein O., Kleinclaus I., Kopp N., Koubaïssi W., Krzisch S., Kujas M., Laboisse C., Labrousse F., Lacroix C., Lagarde N., Lagarrigue J., Lajat Y., Langlois O., Lapierre F., Laquerriere A., Laurent M.-C., Le Gall F., Le Houcq M., Leduc F., Le Guerinel C., Legars D., Lejeune J.-P., Lemaire J.-J., Lena G., Lepeintre J.-F., Leriche B., Lescure J.-P., Levecq J.-M., Levillain P., Liguoro D., Lioret E., Listrat A., Litre F., 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Peruzzi P., Philippe A., Pialat J., Pierre-Kahn A., Pinaudeau M., Pinelli C., Plas J.-Y., Pluot M., Polivka M., Pommepuy I., Poncet J.-L., Ponnelle T., Porhiel, Pouit R., Pradere M., Privat J.-M., Proust F., Puget S., Quintin-Roue I., Quittet P., Rabehenoina C., Ragragui O., Rasendrarijao D., Raynaud P., Redondo A., Regal R., Regis J., Reme Saumon M., Remond J., Renjard L., Reyns N., Rhabi A., Richard B., Richard S., Richaud J., Riem T., Riffaud L., Robert G., Robert R., Roche P.-H., Rodriguez M.-A., Rodriguez V., Roualdes G., Roujeau T., Rousseaux P., Rousselet M.-C., Rousselot P., Roux F.-E., Roux F.-X., Ruchoux M.-M., Sabatier J., Sabatier P., Saïkali S., Saint Andre J.-P., Saint Blancart P., Saint Pierre G., Saint-Rose C., Sakka L., Salmon B., San Galli F., Sautreaux J.-L., Sawan B., Scavarda D., Scherpereel B., Schill H., Schmidt E., Seigneuret E., Seizeur R., Sevestre H., Sid Ahmed S., Silhouette B., Simon E., Simon H., Sinardet D., Sindou M., Sol J.-C., Sorbara R., Soulard P., Soulard T., Srour R., Stecken J., Sterkers O., Stilhart B., Straub P., Streichenberger N., Tadie M., Taha S., Taillandier L., Terrier J.-P., Tortel M.-C., Toussaint P., Touta A., Touzet G., Tremoulet M., Trouillas J., Tubiana A., Turak B., Turlin B., Uro-Coste E., Vallée B., Van Effenterre R., Vandenbos F., Vargas J., Varlet P., Velut S., Vidal J., Viennet G., Vignaud J.-M., Vignes J.-R., Vinchon M., Visot A., Vital A., Voirin J., Wager M., Xerri L., Yaziji N., Yver M., Zafrani E.-S. This work was conducted under the financial support of a grant from the “Ligue Nationale Contre le Cancer” (France), the “Groupe de Neuro-Oncologie du Languedoc Roussillon” (France) and Schering-Plough laboratory.
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The author groups includes participation of Association des Neuro-Oncologues d’Expression Française, Société Française de Neurochirurgie, Société Française de Neuropathologie, Groupe de Neuro-Oncologie de la Fédération des Centres de Lutte Contre le Cancer.
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Bauchet, L., Rigau, V., Mathieu-Daudé, H. et al. French brain tumor data bank: Methodology and first results on 10,000 cases. J Neurooncol 84, 189–199 (2007). https://doi.org/10.1007/s11060-007-9356-9
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DOI: https://doi.org/10.1007/s11060-007-9356-9