OFELy French Registry: National database and biological resources for Lynch Syndrome research

Christine Lasset1,2, Laetitia Marie dit Asse1, Sophie Lejeune3, Jean-Christophe Saurin4, Rosine Guimbaud5, Géraldine Perkins6, Chrystelle Colas7,8, Marion Dhooge 9, Françoise Desseigne1, Capucine Delnatte10, Olivier Caron11, Michel Longy12, Carole Corsini13, Catherine Noguès14, Dominique Leroux15, Yves-Jean Bignon16, Samuel Le Sourd17, Laurence Faivre18,19, Marie-Emmanuelle Morin-Meschin20, Bruno Buecher8, Isabelle Coupier21, Jean-Pierre Fricker22, Marie-Agnès Collonge Rame23, Sandra Fert-Ferrer24, Emmanuelle Fourme25, Hélène Dreyfus26, Paul Gesta27, Séverine Audebert28, Jean Chiesa29, Véronique Mari30, Fabienne Prieur31, Christine Maugard32, Odile Bera33, Isabelle Mortemousque34, Alain Lortholary35, Youenn Drouet1, Elodie Pleynet1, Pierre Laurent-Puig36,37, Thierry Frébourg38,39

1Centre Léon Bérard, Lyon, France. 2Université de Lyon UMR 5558 , Villeurbanne, France. 3CHR Lille, Lille, France. 4Hospices Civils de Lyon, Lyon, France. 5Institut Universitaire du Cancer, Toulouse, France. 6Hôpital Européen George Pompidou , Paris, France. 7Groupe Hospitalier Pitié-Salpétrière, Paris, France. 8Institut Curie, Paris, France. 9Hôpital Cochin, Paris, France. 10ICO Nantes, Nantes, France. 11Institut Gustave Roussy, Villejuif, France. 12Institut Bergonié, Bordeaux, France. 13Institut du cancer de Montpellier Val d’Aurelle, Montpellier, France. 14Institut Paoli Calmettes, Marseille, France. 15CHU Grenoble Alpes, Grenoble, France. 16Centre Jean Perrin, Clermont Ferrand, France. 17Centre Eugène Marquis, Rennes, France. 18CHU Dijon, Dijon, France. 19Centre Georges-François Leclerc, Dijon, France. 20ICO Angers, Angers, France. 21CHRU Montpellier, Montpellier, France. 22Centre Paul Strauss, Strasbourg, France. 23CHRU Besançon, Besançon, France. 24CHU Chambéry, Chambéry, France. 25Institut Curie, Saint-Cloud, France. 26Institut sainte catherine, Avignon, France. 27CH Niort, Niort, France. 28CHRU de Brest, Brest, France. 29CHU Nîmes, Nîmes, France. 30Centre antoine lacassagne, Nice, France. 31CHU de Saint-Etienne – Hôpital Nord, Saint Priest en Jarez, France. 32CHU Strasbourg – Hôpital Civil, Strasbourg, France. 33CHU Martinique, Fort de France, France. 34CHRU Tours, Tours, France. 35Centre Catherine de Sienne, Nantes, France. 36Hôpital Européen Georges Pompidou , Paris, France. 37INSERM U775, paris, France. 38CHU Rouen, Rouen, France. 39UMR U614 INSERM , Rouen, France



The OFELy project aims to create a national clinical-biological database on Lynch syndrome with two associated virtual biobanks (constitutional DNA and tumour samples).


A total of 45 French oncogenetic centres are included in the project with a retrospective collection of data from 1995 to 2018.


As of 11/06/2019, 1522 families have been recruited and 1425 families with 32254 individuals have controlled data

In total, 712 families (50%) satisfy Amsterdam II Criteria and 537 (37.7%), 611 (42.9%), 220 (15.4%), 42 (2.9%), 15 (1.1%) of families have MLH1, MSH2, MSH6, PMS2, EPCAM genes, respectively.

In total, 7687 patients including 3912 women (50.9%) had at least one tumor including 1652 (21.5%) 2 or more tumors.

Among the 10302 tumours observed (half of which were diagnosed before the age of 50), 5120 (49.7%) colorectal cancers,

1164 (11.3%) of the endometrium or uterus SAI, 358 (3.5%) of the urinary tract including bladder cancer and kidney cancer, 246 (2.4%) of the small intestine, 190 (1.8%) of the ovary, 160 (1.6%) of the pancreas, 49 (0.5%) of the bile ducts are observed.

Of the 6890 individuals with a genetic test, 3614 (52.4%) carry a mutation of an MMR gene, 58.5% of whom have cancer.

In total, tumour material  is available for 984 histologically confirmed cancers and constitutional DNA is available for 5424 individuals, including 3304 with mutation.


This database will be used to produce penetrance estimates for rare tumours in the Lynch spectrum and may contribute to further research on Lynch syndrome.