Epidemiological study on young gestational ages

Epipage 2 is a national study to better understand the future of premature infants.

Key elements

  • Launched in 2011
  • 5,600 living children born before 35 weeks of amenorrhea (WA): extreme premature babies (22-26 WA), very premature babies (27-31 SA), premature babies (32-34 WA)
  • Followed from birth to adolescence

Objectives of the cohorte

The study Epipage 2 follows on from the Epipage 1 study, conducted on all very premature babies born in 9 regions of France in 1997, by the same research team.

Since 1997, the situation has changed. Premature infants are more numerous, their survival has improved and practices in obstetrics and neonatology have evolved. It was therefore essential to know, 15 years after EPIPAGE 1, how the prognosis in such children had evolved, beyond the first weeks of life.

The work carried out around these children provides original information on their long-term future, in view of the progress made in recent years. Such work is a valuable aid to medical teams in the care and follow-up of children and will enable families to be better informed.

This study provides answers to many questions concerning extreme prematurity:

  • Improving knowledge on the causes of prematurity
  • Evaluating the effects of the organization of care and medical practices on the health and development of premature infants
  • Better understanding the future of very premature children and determining the specific care needs during childhood
  • To study in a comprehensive, multidisciplinary manner the major issues of health, development and socialization of such children in the medium and long term.

Management and governance

The Epipage 2 cohort is coordinated by Pierre-Yves Ancel.

The Epipage 2 cohort is associated with the ELFE (French Longitudinal Study since Childhood) cohort as part of the RECONAI (Research Platform on Cohorts of Children Followed from Birth) project, a research platform on cohorts of children followed from birth to be able to study in a comprehensive, multidisciplinary manner the major dimensions of the health, development, and socialization of children.  This platform was authorized by Council of State Decree No. 2016-888 of June 29, 2016 on the creation of an automated processing of personal data called the “RECONAI Platform”.

As part of this project, the two cohorts have, since their start in 2011, pooled a certain number of collection objectives and tools. Since the age of 9, the organization of the follow-up stages has been entirely pooled (identical methods for informing families, organization of surveys and data collection using common questionnaires) even if certain questions or methods remain adapted to the situation of premature infants. 

The Epipage 2 cohort has received financial support from the Public Health Research Institute/Public Health Thematic Institute of Inserm (National Institute of Health and Medical Research) and its funding partners (Ministry of Health and Sports, Ministry for Research, National Cancer Institute and National Solidarity Fund for Autonomy).

Informations détaillées

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Terms and conditions of accessing cohort data

  • Data accessible to any public or private research team, French or foreign, based on a research project and under the conditions specified in a data access charter
  • Exclusivity over 18 months for research teams having helped to set up the Epipage 2 study, from the date of data availability, at each phase of the investigation
  • Two project evaluation authorities: Scientific Group (GS) made up of epidemiologists, pediatricians and obstetricians who assess the scientific relevance of the request; Data Access Group (GAD) composed mainly of statisticians and data managers.
  • Terms and conditions of access and documentation required for any request (FR)
EPIPAGE 2
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French Longitudinal Study from Childhood.

ELFE  is the first French longitudinal cohort on a national scale devoted to the follow-up of children, which addresses the multiple aspects of their lives from the perspective of social sciences, health, and the environment.

For the first time, researchers from all walks of life are following the history of children from birth to adulthood.

Key elements

  • 18,300 children followed
  • Since 2011
  • For 20 years

Objectives of the cohorte

More than 18,000 children born in metropolitan France in 2011 were enrolled in the study, which represents one in every 50 children born in 2011. The observation of children born in the same period, over a period of twenty years, represents a unique opportunity to better understand what influences their development and how they find their place in society.

The ELFE study mobilizes more than 150 researchers from many scientific disciplines. Those researchers are interested in the health of children, their schooling, their diet, their family and social life and their environment. Cross-referencing these multiple pieces of information makes all the scientific richness of the ELFE study.

Management and governance

Directed by Marie-Aline Charles, steered by the National Institute for Demographic Studies (INED) and the National Institute of Health and Medical Research (Inserm), in partnership with the French Blood Establishment (EFS), the ELFE study is supported by a number of ministries and public institutions.

Detailed information

Publications here.

Terms and conditions of accessing cohort data

To find out how to access cohort data, click here (FR).

ELFE
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Bladder Cancer Research Cohort

Bladder cancer is the sixth leading cause of cancer in Europe. Despite its high incidence, very few studies have been carried out on this cancer, particularly on the identification of therapeutic targets and theranostic biomarkers (analyzing genetic characteristics whose results will influence a person’s treatment), and on the cost effectiveness evaluation of treatments. This assessment is particularly important, as bladder cancer is one of the most expensive cancers to treat, with long follow-up periods, high recurrence rates, multiple surgeries and invasive monitoring.

Key elements

  • Launched in 2012
  • 1,800 patients newly diagnosed with bladder cancer
  • followed for 6 years

Objectives of the cohorte

So far, no effective targeted therapy and no predictive marker for disease recurrence or progression have been identified. Tobacco and certain occupational exposures to aromatic amines are established risk factors for bladder cancer; however, their role on the molecular characteristics of tumors and on disease progression is poorly understood and probably depends on genetic and/or epigenetic factors.

The objective of the consortium, which includes teams from different specialties (epidemiology, health economics, urology, pathology, and molecular biology), is to establish a prospective cohort of patients with bladder cancer.

Patients are recruited in 14 clinical centers in France and are followed for 6 years.

Socio-demographic, environmental, clinical, economic, and quality of life data are collected at enrollment and during follow-up, in addition to samples of tumor tissue, blood, and urine.

An expanded consortium was formed from the consortium responsible for a Tumor Identity Card® project of the National League Against Cancer, which generated significant results, including the identification of a specific progression marker for certain bladder cancer subtypes. These results make it possible to consider bladder cancer as several distinct diseases and not as a single entity. 

This cohort will make it possible to:

  • Study the combined effects and interactions of multiple genetic variants (or biological pathways) and environmental factors on the molecular subtypes of tumors, 
  • Study the characteristics of recurrences/progressions on sequential tumor samples, 
  • Confirm previous results and those of the literature on a large number of tumors collected prospectively, 
  • Transfer the results of the studies to the clinic,
  • Evaluate the use of health resources in current practice and their evolution, 
  • Promote French research and active participation in international studies.

Management and governance

COBLAnCE falls under the scientific direction of Simone Benhamou, from the Oncostat team of the CESP-Inserm research center in epidemiology and population health (National Institute of Health and Medical Research), U1018, in collaboration with Julia Bonastre, from the Gustave Roussy Institute, Thierry Lebret, from the Foch Hospital, and François Radvanyi and Yves Allory, from the Curie Institute.

Detailed informations

  • Benhamou S, et al. A prospective multicenter study on bladder cancer: the COBLAnCE cohort. BMC Cancer, 2016 ; 16(1):837

Terms and conditions of accessing cohort data

  • Accessible to academic and industrial teams
  • By request, under certain terms and conditions: cohort data/sample access charter communicated after request; evaluation of research project synopses by the steering committee and validated by COBLAnCE’s Scientific Advisory Board; contracting co-managed by COBLAnCE and Inserm Transfert.
  • Contact:  COBLAnCE website 
COBLANCE
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Cohort of women with localized breast cancer

CANcer TOxicities. Cohort of women with localized breast cancer: study of the chronic toxicities of cancer treatments

The CANTO study aims to describe the chronic toxicities of cancer treatments, to identify the populations likely to develop them and to adapt the treatments accordingly, in order to guarantee a better quality of life.

Key elements

  • Since 2012
  • 13,250 women with stage I to III breast cancer

Objectives of the cohorte

For ten years, the CANTO study has supported more than 13,000 women treated for breast cancer.

The project has four specific objectives:

  • Listing the adverse events occurring in these women and potentially linked to the chronic toxicity of cancer treatments (surgery, radiation therapy, hormone therapy, etc.).
  • Describing the chronic toxicity of such treatments (incidence, clinical and biological picture, etc.).
  • Describing the psychosocial and economic impact of chronic toxicities.
  • Developing predictive models of chronic toxicity, based on the study of genetic polymorphisms (SNP arrays, genetic variants) and serum biomarkers (proteins, antibodies).

Its purpose is to improve the quality of life of women treated for localized breast cancer by preventing the toxic effects of treatment. It is part of one of the pillars of the Cancer Plan 2: life after cancer.

Publications récentes

I Vaz Luis et al., UNICANCER- French prospective cohort study of treatment-related chronic toxicity in women with localized breast cancer (CANTO), ESMO Open, 2019

Di Meglio et al., Body weight and return to work among survivors of early-stage breast cancer, ESMO Open, 2020

S. Lee et al., Prediction of Breast Cancer Treatment-Induced Fatigue by Machine Learning Using Genome-Wide Association Data, JNCI cancer spectrum, 2020

A Dumas et al., Impact of Breast Cancer Treatment and its Physical and Psychological Late Effects on Employment – Results of a Multicenter Prospective Cohort Study (CANTO), Journal of Clinical Oncology, 2020

B Pistilli et al., Serum detection of non-adherence to adjuvant tamoxifen and breast cancer recurrence risk, Journal of Clinical Oncology, 2020

  • Plus de publications ici.       

Management and governance

The CANTO study is coordinated by Dr Fabrice André, oncologist at the Gustave Roussy Cancer Institute (IGR, Villejuif) and research director at the National Institute of Health and Medical Research (Inserm), in Inserm unit U981 - Gustave Roussy Institute – Paris-Sud 11 University “Predictive biomarkers and new molecular strategies in cancer therapy”.

I Vaz Luis et al., UNICANCER- French prospective cohort study of treatment-related chronic toxicity in women with localized breast cancer (CANTO), ESMO Open, 2019

Di Meglio et al., Body weight and return to work among survivors of early-stage breast cancer, ESMO Open, 2020

S. Lee et al., Prediction of Breast Cancer Treatment-Induced Fatigue by Machine Learning Using Genome-Wide Association Data, JNCI cancer spectrum, 2020

A Dumas et al., Impact of Breast Cancer Treatment and its Physical and Psychological Late Effects on Employment – Results of a Multicenter Prospective Cohort Study (CANTO), Journal of Clinical Oncology, 2020

B Pistilli et al., Serum detection of non-adherence to adjuvant tamoxifen and breast cancer recurrence risk, Journal of Clinical Oncology, 2020

  • Plus de publications ici.   

Terms and conditions of accessing cohort data

  • Project leaders wishing to use the database and/or the sample collection can contact the team in charge of the cohort at UNICANCER via the address canto@unicancer.fr.
  • A standard descriptive sheet must be filled out by the project leader, in order to be able to distribute it to the executive committee of the CANTO study.
  • If the project is accepted, then the sponsor is informed and a data/sample transfer contract is drawn up.
  • The database collecting the study information is hosted by Unicancer (HDS host). 
CANTO
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