title: [Conduct of epidemiologic studies in French cancer survivors: Methods, difficulties encountered and solutions provided. Lessons learned from the SIMONAL study on long-term toxicities after non-Hodgkin lymphoma treatment].
abstract: BACKGROUND
  Since the introduction of targeted therapies, specific lymphoma mortality has decreased. Possible long-term toxicities, however, are not known yet. This article describes the implementation of the SIMONAL study that investigates the hypothesis of an overconsumption of care after lymphoma treatment with a 10-year follow-up.
  
  
  METHODS
  After the mandatory regulatory steps (CCTIRS and CNIL) the vital status and address of 5247 patients treated in 131 French centers were retrieved using a secure web portal, in order to send a quality of life after lymphoma questionnaire. After an additional vital status validation request at the center for epidemiologic research and population health (CESP), the questionnaires were sent. Double data entry was performed on the collected data and a request to access data from France's public health insurance scheme information system (SNIIRAM) was formulated.
  
  
  RESULTS
  Retrieval of the addresses via the portal has been slow and multiple reminders were needed. The CESP identified 9.4 % additional deaths not known by the treatment centers. Of the 3391 questionnaires sent, the response rate was 50%. A comparison between the responders and non-responders revealed no demographic differences but showed that the responders were more often treated with targeted drugs as they were included in more recent trials.
  
  
  CONCLUSIONS
  Logistic and information technology (IT) aspects rendered the implementation of the SIMONAL study more complex, time consuming and costly. However, using the collected data, many future research questions will be addressed.
authors.affiliation: CHU de Nice, délégation de la recherche clinique et de l'innovation, 4, avenue Reine-Victoria, 06003 Nice, France.
authors.forename: Sabine
authors.initials: S
authors.lastname: Anthony
authors.affiliation: CHU de Nice, délégation de la recherche clinique et de l'innovation, 4, avenue Reine-Victoria, 06003 Nice, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Hebel
authors.affiliation: CHU de Nice, direction du système d'information, 4, avenue Reine-Victoria, 06003 Nice, France.
authors.forename: André
authors.initials: A
authors.lastname: Garrel
authors.affiliation: CHU de Nice, délégation de la recherche clinique et de l'innovation, 4, avenue Reine-Victoria, 06003 Nice, France.
authors.forename: Vanina
authors.initials: V
authors.lastname: Oliveri
authors.affiliation: CHU Saint-Louis, 1, avenue Claude-Vellefaux, 75010 Paris, France.
authors.forename: Catherine
authors.initials: C
authors.lastname: Thieblemont
authors.affiliation: Institut Gustave-Roussy, 114, rue Édouard-Vaillant, 94800 Villejuif, France.
authors.forename: Vincent
authors.initials: V
authors.lastname: Ribrag
authors.affiliation: Centre Henri-Becquerel, rue d'Amiens, 76000 Rouen, France.
authors.forename: Hervé
authors.initials: H
authors.lastname: Tilly
authors.affiliation: CHU Henri-Mondor, 51, avenue du Maréchal-de-Lattre-de-Tassigny, 94010 Créteil, France.
authors.forename: Corinne
authors.initials: C
authors.lastname: Haioun
authors.affiliation: CHU Le Bocage, 14, rue Paul-Gaffarel, 21000 Dijon, France.
authors.forename: René-Olivier
authors.initials: RO
authors.lastname: Casasnovas
authors.affiliation: CHU de Lille, hôpital Claude-Huriez, rue Michel-Polonowski, 59000 Lille, France.
authors.forename: Franck
authors.initials: F
authors.lastname: Morschhauser
authors.affiliation: CHU Nancy, 5, rue du Morvan, 54500 Vandœuvre-lès-Nancy, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Feugier
authors.affiliation: AP-HP, hôpital universitaire Necker-Enfants-Malades, 149, rue de Sèvres, 75015 Paris, France.
authors.forename: Richard
authors.initials: R
authors.lastname: Delarue
authors.affiliation: Institut universitaire du cancer de Toulouse, oncopôle, avenue Hubert-Curien, 31100 Toulouse, France.
authors.forename: Loic
authors.initials: L
authors.lastname: Ysebaert
authors.affiliation: CLCC Berar, 28, promenade Léa-et-Napoléon-Bullukian, 69008 Lyon, France.
authors.forename: Catherine
authors.initials: C
authors.lastname: Sebban
authors.affiliation: Centre hospitalier Lyon-Sud, LYSA-RC, secteur Sainte-Eugénie, pavillon 6(e), 69495 Pierre-Bénite, France.
authors.forename: Florence
authors.initials: F
authors.lastname: Broussais
authors.affiliation: CHU de Caen, avenue de la Côte-de-Nacre, 14003 Caen, France.
authors.forename: Gandhi
authors.initials: G
authors.lastname: Damaj
authors.affiliation: Institut régional fédératif de cancérologie, 3, boulevard Fleming, 25000 Besançon, France.
authors.forename: Virginie
authors.initials: V
authors.lastname: Nerich
authors.affiliation: Université Paris Descartes, 12, rue de l'École-de-Médecine, 75006 Paris, France.
authors.forename: Jean-Philippe
authors.initials: JP
authors.lastname: Jais
authors.affiliation: Hospices civils de Lyon, 3, quai des Céléstins, 69002 Lyon, France.
authors.forename: Gilles
authors.initials: G
authors.lastname: Salles
authors.affiliation: CLCC Baclesse, 3, avenue du Général-Harris, 14000 Caen, France.
authors.forename: Michel
authors.initials: M
authors.lastname: Henry-Amar
authors.affiliation: CHU de Nice, hôpital l'Archet 1, service d'onco-hématologie, 151, route Saint-Antoine-Ginestière, 06202 Nice, France. Electronic address: mounier.n@chu-nice.fr.
authors.forename: Nicolas
authors.initials: N
authors.lastname: Mounier
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000970:Antineoplastic Agents / Q000627:therapeutic use; D003625:Data Collection / Q000379:methods / Q000706:statistics & numerical data; D003710:Demography / Q000706:statistics & numerical data; D005260:Female; D005500:Follow-Up Studies; D005602:France / Q000453:epidemiology; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D020407:Internet; D008228:Lymphoma, Non-Hodgkin / Q000453:epidemiology* / Q000401:mortality / Q000628:therapy; D008297:Male; D008875:Middle Aged; D058990:Molecular Targeted Therapy; D000069283:Rituximab / Q000627:therapeutic use; D011795:Surveys and Questionnaires; D013997:Time Factors
chemical_list: D000970:Antineoplastic Agents; D000069283:Rituximab
keywords: Autogreffe; Autotransplantation; Chemotherapy; Chimiothérapie; Long-term follow-up; Lymphome non Hodgkinien; Non-Hodgkin lymphoma; Rituximab; Survivants; Survivorship; Toxicités tardives