Long term outcome of esophageal atresia: transomics profiles in adolescence

Esophageal atresia (EA), a malformation of the esophagus present at birth, is characterized by the interruption of the continuity of the esophagus, which then terminates in a blind pouch. Food or saliva cannot be carried into the stomach. It affects an average of 150 births per year in France, making it a rare disease.

Surgery is necessary to reconnect the esophagus. Although this intervention allows the vast majority of children to survive the neonatal period, health problems such as gastroesophageal reflux, difficulty eating, respiratory issues, as well as growth problems may persist throughout life

Project objectives

The objective of the project is to create a prospective cohort of adolescents aged 13/14 years, nested within the national registry of esophageal atresia (EA). In addition to clinical data, a biobank of esophageal mucosa and plasma samples will be established.

Once the clinical data has been collected and omics data (derived from the analysis of biological samples from the biobank) generated, they will be analyzed by project partners to assess the long-term outcomes of EA and to establish multi-omics profiles.

Key elements

  • Project Duration: Spanning from 2022 to 2028, allowing for a comprehensive longitudinal study.
  • Largest Adolescent Cohort with Esophageal Atresia: Aimed at assembling the largest group of adolescents with esophageal atresia worldwide, enhancing the study's statistical power and generalizability.
  • First Large-scale Omics Analysis in this Population
  • Co-creation with Patients and Parents: Collaborating with individuals born with esophageal atresia as well as their parents in designing the project, ensuring their perspectives and experiences are integrated into the research process.

Participating centers

Gouvernance

  • Steering committee

    It is composed of a cross-functional team responsible for monitoring and ensuring the smooth progress of the project. It consists of:

    • Professor Frédéric Gottrand, pediatric gastroenterologist at CHU Lille
    • Dr. Mélanie Leroy, project manager at CHU de Lille
    • A representative from the research management team at CHU de Lille
    • A representative from the data management team at CHU de Lille
    • A representative from the biological resource center at CHU de Lille
    • A representative from the biostatistics team at CHU de Lille
    • A representative from the medical team caring for patients with esophageal atresia at CHU de Lille
    • A representative from partner PRISM
    • A representative from partner Go@L
    • A representative from partner Bilille
    • A representative from partner PedStart
    • A representative from AFAO
  • Scientific advisory board

    It exercises an advisory role on academic strategy, in connection with its international scientific expertise. It consists of:

    • Professor Frédéric Gottrand, pediatric gastroenterologist at CHU Lille
    • Dr. Mélanie Leroy, project manager TransEAsome
    • Professor Usha Krishnan, pediatric gastroenterologist in Sydney
    • Professor Arnaud Droit, director of the bioinformatics platform in Québec
    • Professor Simon Eaton, researcher in pediatric surgery and metabolic biochemistry in London
  • Parents' committee

    Recruited from within the AFAO (Association Française de l'Atrésie de l'Œsophage), these are parents of children born with EA, who are willing volunteers actively participating in various stages of the project's development and implementation.

  • Patients' committee

    X

  • Teenagers expert in clinical research committee

    X

Data availability

The raw data is not yet accessible but will be made available on the France Cohortes platform

This work received support from the Agence Nationale de la Recherche as part of France 2030 program under reference ANR-21-PMRB-0011, as well as funding from the IRCEM Foundation.

Foire aux questions
TransEAsome
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Foire aux questions

  • Pour les patients

    Un centre participant m'a proposé cette étude, quels sont mes droits ? 

    Vous êtes libre de refuser de participer à la recherche sans avoir à vous justifier et sans que la relation de soin existant avec l’équipe médicale ne soit altérée. 

    Vous n’êtes pas obligé de nous donner votre décision tout de suite ; vous disposez du temps que vous estimez nécessaire pour prendre votre décision. 

    En cas d’acceptation, vous pourrez revenir sur votre décision et retirer votre acceptation à tout moment, sans avoir à se justifier et sans que cela ne modifie la qualité des soins auxquels vous avez droit. Le traitement des données est basé sur le fondement de l’intérêt public.

    Dans le cadre de la recherche, un traitement de vos données personnelles sera mis en œuvre pour permettre d’analyser les résultats de l’étude au regard de l’objectif de cette dernière qui vous a été présenté. 

    A cette fin, les données médicales vous concernant ou tout autre type de données existantes pourront être transmises au Promoteur de la recherche ou aux personnes ou société agissant pour son compte ou menant des projets de recherche conjoints, en France ou à l’étranger, y compris en dehors de l’Union Européenne à condition que le pays de destination soit reconnu par les autorités françaises comme assurant un niveau de protection des données suffisant et approprié. Aucune donnée susceptible de vous identifier directement ne sera transmise. Vos données seront pseudonymisées, c’est-à-dire qu’elles seront identifiées par un numéro de code et vos initiales. Ces données pourront également, dans des conditions assurant leur confidentialité, être transmises aux autorités de santé françaises et étrangères.

    Conformément aux dispositions de la loi n° 78-17 du 6 janvier 1978 modifiée relative à l’informatique, aux fichiers et aux libertés, et au règlement européen sur la protection des données personnelles (2016/679), vous disposez des droits suivants :

    Droit d’accès : Vous pouvez à tout moment obtenir au cours ou à l’issue de la recherche, communication de vos données de santé détenues par l’investigateur ou, le cas échéant, par le médecin qui le représente. (article 12 RGPD).

    Droit à l'information : Vous disposez d'un droit d'information sur les données personnelles vous concernant collectées, traitées ou, le cas échéant, transmises à des tiers (article 15 RGPD).

    Droit à la rectification : Vous avez le droit de demander la correction des données personnelles incorrectes vous concernant (articles 16 et 19 RGPD).

    Droit d’effacement : Vous avez le droit de demander l’effacement des données personnelles vous concernant uniquement si ces données ne sont plus nécessaires aux fins pour lesquelles elles ont été collectées (articles 17 et 19 de la RGPD).

    Droit à la limitation du traitement : Sous certaines conditions, vous avez le droit de demander une limitation du traitement. Dans ce cas, vos données pourront uniquement être stockées mais pas utilisées dans le cadre du traitement.

    Droit d’opposition : Vous avez le droit de vous opposer à tout moment au traitement de vos données personnelles (article 21 RGPD). Le traitement est alors arrêté par le promoteur, sauf motifs légitimes et impérieux, ou pour la constatation, l'exercice ou la défense de droits en justice.

    Pour exercer l'un de ces droits, vous pouvez contacter le médecin investigateur de l’étude ou le délégué à la protection des données du promoteur (DPO).Vous avez également le droit de déposer une plainte auprès de la Commission Nationale Informatique et Libertés (CNIL) si vous estimez que le traitement de vos données personnelles est réalisé en violation de vos droits.

    Contact Délégué à la Protection des Données (DPO)

    CHU de Lille

    2 avenue Oscar Lambret

    59037 LILLECEDEX

    DPO@chru-lille.fr 

    Contact CNIL

    Commission Nationale de l'Informatique et des Libertés

    Adresse postale

    3 Place de Fontenoy

    TSA 80715 

    75334 PARIS CEDEX 07 

    https://www.cnil.fr/fr/plaintes 

     

    Si vous le souhaitez, vous obtiendrez communication des résultats globaux de l’étude à la fin de celle-ci, il vous suffira d’adresser un courrier précisant vos coordonnées au Docteur AUMAR, unité de gastroentérologie, hépatologie et nutrition pédiatrique, Hôpital Jeanne de Flandre, CHU de Lille, Avenue Eugène Avinée, 59037 Lille cedex.

    Vous n’aurez à supporter aucune charge financière supplémentaire du fait de votre participation à cette étude.

  • Pour les investigateurs

    Est-ce que l’endoscopie à 13-14 ans est obligatoire pour inclure un patient ? 

    Non, elle ne l’est pas . Cependant, si vous réalisez une endoscopie dans les environs (10-14 ans) de la consultation dans le cadre du soin, nous sommes intéressés de récupérer 4 copeaux des blocs de biopsies œsophagienne. 

     

    J’ai un patient qui répond au critère d’inclusion, mais qui ne figure pas sur la liste fournie par l’équipe projet. Est-ce que je peux l’inclure ? 

    Oui tout à fait. Il faut néanmoins nous contacter pour connaitre son numéro d’inclusion dans le registre (qui sera aussi son numéro d’inclusion dans TransEAsome). 

     

    A l’inverse, j’ai un patient sur la liste fournie par l’équipe projet qui ne vient plus en consultation dans notre centre. Que faire ? 

    Prévenir l’équipe projet. En fonction des cas, nous essayerons de voir si ce patient a initié un suivi dans un autre centre et pourrait y être inclus. 

     

    J’ai des difficultés pour mettre en place l’étude, je manque de ressources humaines. Que faire ? 

    Nous contacter. Notre objectif est de lever tous les freins au recrutement. Si nécessaire, nous pouvons nous déplacer dans votre centre. D’une manière générale, si vous avez un soucis, contactez-nous, nous réfléchirons à une solution ensemble. 

     

    Quels sont les documents à renvoyer après la mise en place pour être autorisé à inclure ?  

    Il faut renvoyer à Coline Chaussier la page de signature du protocole, la liste de participants à la mise en place, la délégation des taches, les CV et certificats des bonnes pratiques cliniques des personnes y figurant (hormis ceux de l’investigateur principal que nous avons déjà) et la site training log où il faut indiquer que les personnes présentes à la mise en place ont été formées par Coline Chaussier en visio. 

Création d’un entrepôt de données Maladies Rares de l’œil (FREDD) et d'un pilote en intelligence artificielle pour les rétinopathies pigmentaires

La rétinopathie pigmentaire (RP), une dystrophie héréditaire de la rétine, constitute une cause majeure de malvoyance.

Objectifs du projet

Le projet RaReTiA a comme objectif principal de créer un entrepôt de données de santé national au sein de France Cohortes et d’adresser ses premiers défis scientifiques.

Gouvernance

Responsable scientifique et technique : Hélène DOLLFUS, Inserm UMRS_1112 – Laboratoire de Génétique Médicale & Université de Strasbourg

RaReTiA - EN
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Base de données pour les maladies mitochondriales, une approche multi-OMICS intégrativ

Objectifs du projet

Une base de données installée dans le système d’information de France Cohortes et dans le cadre du projet MITOMICS devrait permettre une analyse croisée de données multi-Omics (transcriptomiques / protéomiques / métabolomiques) et de données cliniques et génomiques (WES, WGS) incluant le génome mitochondrial, pour aider à mieux appréhender la complexité et la très grande hétérogénéité clinique et biologique des pathologies mitochondriales.

Gouvernance

Responsable scientifique et technique : Pr Vincent PROCACCIO, Université d’Angers et Centre Hospitalier d’Angers et Pr Sylvie BANNWARTH, Centre Hospitalier de Nice

Ce travail de gestion de données fourni par France Cohortes bénéficie d'une aide de l’État gérée par l'Agence Nationale de la Recherche au titre de France 2030 portant la référence ANR-21-PMRB-0012.

MITOMICS
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Using Artificial Intelligence to create minimum data sets for rare diseases

Objectifs du project

The aim of CDE.ai is to create, within the France Cohortes platform, a set of automatic language processing (ALP) algorithms that will enable clinical research forms to be completed semi-automatically, in particular the rare diseases minimal data set, which is currently completed manually for all patients followed up in rare disease expert centres.

Gouvernance

Scientific and technical coordinators: Pr Guillaume ASSIÉ, Assistance Publique-Hôpitaux de Paris (APHP) Endocrinologie Cochin, University of Paris, Institut Cochin, Institut national de la santé et de la recherche médicale (INSERM), Centre national de la recherche scientifique (CNRS), and Dr Anne-Sophie JANNOT, APHP, Banque nationale des maladies rares (BNDMR), Paris.

This data management work, provided by France Cohortes, benefits from State aid managed by the Agence Nationale de la Recherche under the France 2030 programme, reference ANR-21-PMRB-0012.

CDE.ai
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National cohort dedicated to research on the biological and environmental determinants of autism and neurodevelopmental disorders

The research work carried out within the framework of MARIANNE should make it possible to identify new diagnostic and therapeutic biomarkers, develop earlier personalized care, better understand the mechanisms of autism spectrum disorder (ASD) and its various forms, and orient national policies for the care of this disorder.

Key elements

  • Inclusion and follow-up of 1200 families with a sibling with autism from the prenatal period (parent-baby) compared to 500 families from the general population
  • Launched in July 2022 for a duration of 10 years
  • Inclusion starting in March 2023

Objectives of the cohorte

  • To compare environmental exposure and development from birth to 6 years of age of children with autism spectrum disorder (ASD)/neurodevelopmental disorder (NDD) and those with normal development in a cohort study for which the data will be used to guide a large research infrastructure.
  • To identify and clinically characterize cases of ASD and NDD.
  • To describe the clinical course from birth to age 6 of ASD and NDD cases for different dimensions.
  • To describe access to care and the care pathway of ASD and NDD cases and the modalities of management.
  • To identify prenatal and perinatal risk factors for ASD and NDD related to the external exposome, such as parental health and lifestyle, socioeconomic characteristics, maternal diet during pregnancy, maternal medication use during pregnancy, pregnancy and delivery complications, and environmental chemical exposure
  • To study the interactions between exposome risk factors and the genome in ASD and NDD
  • To assess the medico-economic impact of ASD and NDD
  • To study the impact of parental mental health, access to care and specialized interventions, socio-economic status, and education on child health and outcomes.

Management and governance

The project leaders are Prof. Amaria BAGHDADLI, professor of child psychiatry, head of the Center of Excellence on Autism and Neurodevelopmental Disorders in Montpellier (University and University Hospital) and also a researcher in epidemiology at the french National Institute of Health and Medical Research (Inserm) at the french Center for Research in Epidemiology and Population Health (CESP), and Dr Marie-Christine PICOT, epidemiologist (Montpellier University Hospital and Inserm CESP).

They both have recognized expertise in the setting up of cohorts and the clinical epidemiology of child development disorders. The governance bodies of the cohort include a Steering Committee, a Strategic Council, and a Scientific and Ethical Committee.

Partnership with industry, notably through its contribution to the scientific orientation, will be envisaged in a second phase of the project, after completion of the pilot study, with the support of Inserm transfert.

Informations détaillées

MARIANNE
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Epidemiological study with E3N women and their families

The E3N-Generation study is interested in the influence of the “exposome” - the environment in the broad sense and contemporary lifestyle on health, among people of the same family, over three generations.

Key elements

  • Generalist cohort - over three generations
  • 140,000 participants
  • Since 1990

Objectives of the cohort

The E3N-Generations study relies on a community of families, a family cohort that will eventually have 200,000 participants.

It extends the E3N study which has been actively following since 1990 (30 years!) 100,000 women, by inviting their children, the fathers of those children and their grandchildren to participate in turn.

E3N-E4N is one of only two epidemiological studies in the world of this magnitude bringing together families across three generations.

The members of the same family have genes, habits and living places in common. This vast community of families is a powerful research tool for unraveling what is genetic, lifestyle or environmental in our health.

The study will provide a better understanding of what exposes us to chronic diseases or protects us from them, by comparing the evolution of the health of different groups within the cohort. Researchers are interested in cancers, cardiovascular diseases, inflammatory bowel diseases, diabetes, asthma, Parkinson's disease, depression, anxiety, endometriosis, but also aging well.

The study is involved with other cohorts in research consortia to analyze such topics on a larger scale. That is the case of the European EPIC consortium on cancer (more than 500,000 subjects) and the French SAPRIS study on Covid19 (139,000 participants from 5 cohorts).

This research will make it possible to drive future public health policies and refine prevention messages.

Management and governance

The E3N-Generation study is led by Gianluca Severi, research director at the National Institute of Health and Medical Research (Inserm U1018-CESP). Its governance is ensured by the founding partners: Inserm, the University of Paris-Saclay, the Gustave Roussy Institute, the National League Against Cancer and the National Education General Mutual Benefit Society (MGEN).

Detailed information

  • MacDonald CJ, El Fatouhi D, Anne-Laure Madika AL, Fagherazzi G, Kurth T, Severi G, Boutron-Ruault MC. Association of Migraine With Incident Hypertension After Menopause. A Longitudinal Cohort Study. Neurology Jul 2021, 97 (1) e34-e41
  • Dietary exposure to brominated flame retardants and risk of type 2 diabetes in the French E3N cohort. Ongono JS, Dow C, Gambaretti J, Severi G, Boutron-Ruault MC, Bonnet F, Fagherazzi G, Mancini FR. Environ Int. 2019 Feb;123:54-60. doi:10.1016/j.envint.2018.11.040.
  • Stringhini S, Carmeli C, Jokela M, Avendaño M, Muennig P, Guida F, Ricceri F, d'Errico A, Barros H, Bochud M, Chadeau-Hyam M, Clavel-Chapelon F, et al; LIFEPATH consortium. Socioeconomic status and the 25 × 25 risk factors as determinants of premature mortality: a multicohort study and meta-analysis of 1·7 million men and women. Lancet. 2017 Mar 25;389(10075):1229-1237.
  • Beelen R, Raaschou-Nielsen O, Stafoggia M, Andersen ZJ, Weinmayr G, Hoffmann B, Wolf K, Samoli E, Fischer P, Nieuwenhuijsen M, Vineis P, Xun WW, Katsouyanni K, Dimakopoulou K, Oudin A, Forsberg B, Modig L, Havulinna AS, Lanki T, Turunen A, Oftedal B, Nystad W, Nafstad P, De Faire U, Pedersen NL, Ostenson CG, Fratiglioni L, Penell J, Korek M, Pershagen G, Eriksen KT, Overvad K, Ellermann T, Eeftens M, Peeters PH, Meliefste K, Wang M, Bueno-de-Mesquita B, Sugiri D, Krämer U, Heinrich J, de Hoogh K, Key T, Peters A, Hampel R, Concin H, Nagel G, Ineichen A, Schaffner E, Probst-Hensch N, Künzli N, Schindler C, Schikowski T, Adam M, Phuleria H, Vilier A, Clavel-Chapelon F et al. Effects of long-term exposure to air pollution on natural- cause mortality: an analysis of 22 European cohorts within the multicentre ESCAPE project. Lancet. 2014 Mar 1;383(9919):785-95.
  • Stringhini S, Carmeli C, Jokela M, Avendaño M, McCrory C, d'Errico A, Bochud M, Barros H, Costa G, Chadeau- Hyam M, Delpierre C, Gandini M, Fraga S, Goldberg M, Giles GG, Lassale C, Kenny RA, Kelly-Irving M, Paccaud F, Layte R, Muennig P, Marmot MG, Ribeiro AI, Severi G, et al. LIFEPATH Consortium. Socioeconomic status, non-communicable disease risk factors, and walking speed in older adults: multi-cohort population based study. BMJ. 2018 Mar 23;360:k1046.
  • Plus de publications ici.

Terms and conditions of accessing cohort data

  • Requests for access to data and biological samples from the E3N-E4N cohort for research projects should be sent to: contact@e3n.fr.
  • Assessed by the cohort's access committee according to the endpoints of scientific quality, relevance, quality of the team or teams leading the project, and the relationship with other ongoing projects.
  • Access to data is subject to obtaining the necessary funding and authorizations from the authorities concerned.
E3N-Générations
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Cohort of health examination center consultants

Constances monitors 220,000 volunteers using an annual questionnaire, a health examination every 4 years and by annual matching with the old-age insurance and the national health data system (SNDS) databases. Creation of a biobank of 80,000 volunteers. A cohort of 400,000 persons is strictly representative of the eligible population followed in the administrative databases and makes it possible to study the effects of selection.

Key elements

  • Launched in 2012
  • “Generalist” population cohort
  • Representative sample of 220,000 adults affiliated with the general social security scheme, aged 18 to 69 at enrollment
  • Open to the research and public health community

Objectives of the cohorte

Constances is a tool for epidemiological research, due to its size, the particularly comprehensive nature of the system for monitoring and collecting highly diversified information, using several data sources, it is on the scale of the largest cohorts in the world.

Constances is a tool for public health and monitoring, designed to support the public health objectives of the National Health Insurance Fund (CNAM) and the State, in particular through a partnership with Santé Publique France (French Public Health Agency).

Management and governance

Constances is managed within the framework of the Joint Service Unit (UMS) 11, resulting from a partnership between Inserm, Paris Cité University (UPC), Paris-Saclay University (UPS), and Versailles Saint-Quentin-en-Yvelines University (UVSQ).

The Constances project is carried out thanks to the participation of Health Examination Centers, and with additional support from the National Health Insurance Fund (CNAM), the National Old Age Insurance Fund (Cnav), and the french Ministry of Health (General Directorate of Health). 

It is coordinated by Marie Zins, epidemiologist, research professor at UPC.

List of accessible publications here.

Terms and conditions of accessing cohort data

  • On a scientific project after evaluation by an international Scientific Advisory Board.
  • Open to industry within the framework of partnerships managed by Inserm Transfert.
  • The data matched to the SNDS is accessible via the Secure Data Access Center (CASD) platform.
CONSTANCES
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French cohort of patients suffering from bipolar disorder or schizophrenia

PSY-COH is a research project dedicated to the creation of a national cohort on bipolar disorders and schizophrenia. Its aim is to follow people with bipolar disorder or schizophrenia for several years, in order to characterise the stages of the disease and the associated biological markers.

Key elements

  • Launched in 2014
  • 1,452 patients with psychotic disorders (bipolar disorders and schizophrenia)

Objectives of the cohorte

The main aims of the PSY-COH project are:

  • Identify the clinical forms (age of onset, cognitive decline, somatic comorbidities, etc.) of the diseases and validate the different stages in the evolution of the pathology (staging).
  • Characterisation of patient trajectories and their evolution through the different stages of the disease, and through behavioural indicators, predictive and prognostic biomarkers.
  • Estimating the use of healthcare services, the cost to society and the quality of life of patients suffering from these diseases.
  • Improving early diagnosis and prevention of the mental disorders studied by identifying valid biomarkers and biosignatures (construction of bio-banks enabling ancillary research projects to be set up).
  • Enable national or international academic collaborators, or industrial partners, to access the cohort or the data collected, and accelerate scientific progress in the study of these pathologies.

PSY-CO is divided into several programmes:

  • PSY-COHorte-BP for monitoring patients with bipolar disorder
  • PSY-COHorte-SZ for monitoring patients suffering from schizophrenia

Management and governance

PSY-COH is a programme run by the FondaMental Foundation, a scientific cooperation foundation which relies on the national network of FondaMental Expert Centres and a network of research laboratories (Inserm (Institut National de la Santé et de la Recherche Médicale), CEA (Commissariat à l'Energie Atomique et aux Energies), CNRS (Centre National de la Recherche Scientifique), Institut Pasteur, etc.). ), under the direction of Professor Marion Leboyer, Université Paris Est Créteil, AP-HP (Assistance Publique Hôpitaux de Paris), Inserm and the FondaMental Foundation.

Detailed information

Publications on :

  • Bipolar disorder : here
  • Schizophrenia : here

How to access data

  • On request to the Fondation FondaMental
  • Completion of an application by the project leader wishing to use the database/biological samples.
  • Assessment of the application by the PsyCoh cohort steering committee, which, if it accepts it, informs the project sponsor and draws up a data/biological sample transfer contract.

 

 

 

PSY-COH
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Childhood Cancer Observation Platform

The Childhood Cancer Observation Platform is an infrastructure based on the National Childhood Cancer Registry. Its objective is to contribute to research on the causes and origins of pediatric cancers and on the long-term future of adults who have had cancer in childhood.

Key elements

  • Cohort based on the National Childhood Cancer Registry
  • Includes 40,000 people who had cancer or certain benign tumors before the age of 18
  • Since 2000

Objectives of the cohorte

More specifically, the cohort provides support for multidisciplinary research aimed at better understanding:

  • The long-term effects of the treatments and the remote health of the initial tumor thanks to the data of the COHOPER cohort. It is based on data from questionnaires, medical-administrative data (SNDS) and data collected by the National Childhood Cancer Registry and the PEDIART component on radiation therapy doses.
  • The role of the environment close to home on the risk of cancer in children, thanks to GEOCAP data (20,000 cases, 60,000 controls)

The CCOP also integrates the BIOCAP virtual biobank providing information on tumor and non-tumor samples stored in the anatomical pathology and biology departments or in the biological resource centers.

Management and governance

HOPE-EPI/CCOP is led by Jacqueline Clavel, epidemiologist doctor, senior investigator at the National Institute for Health and Medical Research (Inserm), head of the epidemiology team for childhood and adolescent cancer (EPICEA) from CRESS, UMRS-1153, Inserm, University of Paris

Management is also provided by Brigitte Lacour and Claire Poulalhon, epidemiologists, Valérie Bernier-Chastagner, radiotherapist, and Frédérique Dijoud, anatomical pathologist. The HOPE-EPI/CCOP project manager is Latifa Idbrik (latifa.idbrik[at]inserm.fr).

Informations détaillées

  • Poulalhon C, Goujon S, Marquant F, Faure L, Guissou S, Bonaventure A, Desandes E, Rios P, Lacour B, Clavel J. Factors associated with 5- and 10-year survival among a recent cohort of childhood cancer survivors (France, 2000-2015). Cancer Epidemiol. 2021;73:101950.
  • Berlivet J, Hemon D, Clero E, Ielsch G, Laurier D, Faure L, Clavel J, Goujon S. Residential exposure to natural background radiation at birth and risk of childhood acute leukemia in France, 1990-2009. J Environ Radioact. 2021;233:106613.
  • Berger C, Casagranda L, Sudour-Bonnange H, Massoubre C, Dalle JH, Teinturier C, Martin-Beuzart S, Guillot P, Lanlo V, Schneider M, Dal Molin B, Dal Molin M, Mounier O, Garcin A, Fresneau B, Clavel J, Demoor-Goldschmidt C. Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes. Appl Clin Inform. 2021;12(2):237-44.
  • Poulalhon C, Vignon L, Idbrik L, Bernier-Chastagner V, Fabre M, Schleiermacher G, Dijoud F, Perrin C, Varlet P, Faure L, Guissou S, Desandes E, Hemon D, Berger C, Lacour B, Clavel J. Data Resource Profile: The French Childhood Cancer Observation Platform (CCOP). Int J Epidemiol. 2020;49(5):1434-5k.
  • Coste A, Goujon S, Faure L, Hemon D, Clavel J. Agricultural crop density in the municipalities of France and incidence of childhood leukemia: An ecological study. Environ Res. 2020;187:109517.
  • Berlivet J, Hemon D, Clero E, Ielsch G, Laurier D, Guissou S, Lacour B, Clavel J, Goujon S. Ecological association between residential natural background radiation exposure and the incidence rate of childhood central nervous system tumors in France, 2000-2012. J Environ Radioact. 2020;211:106071.
  • Demoury C, Marquant F, Ielsch G, Goujon S, Debayle C, Faure L, Coste A, Laurent O, Guillevic J, Laurier D, Hemon D, Clavel J. Residential Exposure to Natural Background Radiation and Risk of Childhood Acute Leukemia in France, 1990-2009. Environ Health Perspect. 2017;125(4):714-20.
  • Coste A, Hémon D, Orsi L, Boniol M, Doré J-F, Faure L, Clavel J, Goujon S. Residential exposure to ultraviolet light and risk of precursor B-cell acute lymphoblastic leukemia: assessing the role of individual risk factors, the ESCALE and ESTELLE studies. Cancer Causes Control. 2017;28(10):1075-83.
  • Marquant F, Goujon S, Faure L, Guissou S, Orsi L, Hémon D, Lacour B, Clavel J (2016) Risk of Childhood Cancer and Socio-economic Disparities: Results of the French Nationwide Study Geocap 2002-2010. Paediatr Perinat Epidemiol 30(6): 612-622

Terms and conditions of accessing cohort data

  • Contact the coordinator.
  • A call for expressions of interest will be published regularly.
HOPE-EPI / CCOP
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Therapeutic options for hepatitis B and C: a French cohort

Keys elements

  • Launched in 2012
  • For a period of 10 years
  • 21,000 patients with chronic-stage or cured hepatitis B (6,000) or C (15,000)

Objectives of the study

The cohort aims to improve knowledge about viral hepatitis. 

Initiated in 2012, the ANRS CO22 HEPATHER cohort makes it possible to study the timecourse of liver disease of patients suffering from hepatitis C or B, in the chronic phase of the disease or cured, whether they have received treatment or not. The objective is to improve knowledge and improve patient care. These patients will be followed for approximately ten years.

It includes, to date, 20,918 patients with hepatitis B or C. More than 10,000 of them have started a new direct-acting antiviral treatment for hepatitis C under Temporary Authorizations for Use (ATU) or Marketing Authorizations (AMM).

Management and governance

The ANRS CO22 HEPATHER cohort is promoted by the ANRS-Emerging Infectious Diseases, and falls under scientific officer Pr. Fabrice Carrat, UMR-S 1136 (IPLESP), and coordinating investigators Pr. Stanislas Pol and Dr. Helene Fontaine, APHP, Paris. It brings together hepatologists from the French Association for the Study of the Liver (AFEF).

Informations détaillées

1. Late presentation for HCV care: time to target people with diabetes and/or hazardous alcohol use (ANRS CO22 HEPATHER cohort). Santos M, Protopescu C, Delarocque-Astagneau E, Bourlière M, Petrov-Sanchez V, Di Beo V, Larrey D, Baudoin M, Dorival C, Bureau M, Fontaine H, Carrat F, Marcellin F, Pol S, Carrieri P, ANRS CO22 HEPATHER study group. Liver International 2021 PMID: 34520614 DOI: 10.1111/liv.15056

2. Letter: tenofovir may be superior to entecavir for treatment-naïve chronic hepatitis B patients-authors’ reply. 
Pol S, Lusivika Nzinga C, Carrat F. Aliment Pharmacol Ther. 2021 May;53(9):1050.doi: 10.1111/apt.16340.

3. External validation of LCR1-LCR2, a multivariable HCC risk calculator, in patients with chronic HCV. 
Poynard T, Lacombe JM, Deckmyn O, Peta V, Akhavan S, De Ledinghen V, Zoulim F, Samuel D, Mathurin P, Ratziu V, Thabut D, Housset C, Fontaine H, Pol S, Carrat F. JHEP Rep. 2021 Apr 24;3(4):100298.doi: 10.1016/j.jhepr.2021.100298. eCollection 2021 Aug.

  • More publications here.

Data access terms and conditions

 

 

ANRS CO22 HEPATHER
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