The missions of Santé publique France for the surveillance of congenital anomalies
Santé publique France created by Ordinance No. 2016-462 of April 14, 2016, is a public State institution of an administrative nature, placed under the supervision of the Ministry of Health.
As part of these missions of "permanent surveillance and observation of the population’s health", Santé publique France monitors congenital anomalies, which figure among the major determinants of perinatal and neonatal health. Congenital anomalies constitute one of the main causes of infant mortality, morbidity and disability in the industrialized countries for which data are available. They also affect nearly 3% of births worldwide and in Europe, 22% of which result in spontaneous death in utero or medical termination of pregnancy1. In France, in 2017, congenital anomalies were responsible for 18% of deaths of live born children during their first year of life2.
The epidemiological surveillance system for congenital anomalies is based in France, as in most Western countries, on seven registers, which currently cover 19% of births in France and will cover approximately 26% of births by 2026. The geographical distribution and the population covered by these registers varies as follows:
- two overseas (in the West Indies and on Reunion Island),
- one register covering an exclusively urban population (Paris),
- one register with a predominantly rural population (Auvergne),
- one register with both rural and maritime population (Brittany),
- one register covering a rural, urban and industrial population (Rhône-Alpes)
- and a register that covers maritime, urban, rural and wine-growing territories (New Aquitaine).
Some of these registers have been operational for more than 30 years (Paris since 1981, Auvergne since 1983) and others have been recently created (New Aquitaine since 2021). They ensure an exhaustive collection of all cases of children with congenital anomalies, irrespective of the term of the pregnancy which includes:
- children born alive,
- stillborn fetuses following a pregnancy of at least 22 weeks of gestational age,
- r fetuses who had medical termination of pregnancy for congenital anomaly.
Within the Department of Non-Communicable Diseases and Traumatisms (DMNTT) of Santé publique France, the Perinatal and Early Childhood Health Surveillance Unit of Santé publique France ensures the national coordination of the surveillance of congenital anomalies. A team of two epidemiologists is in charge of the scientific coordination and management of the registers and the analysis of longitudinal trends in prevalence and territorial disparities for 21 subgroups of major congenital anomalies. They also bring their expertise on alerts related to suspicions of clustering of cases or "clusters" of children with congenital anomalies in a given area and/or over a limited time.
How to apply
The application must include:
- a letter of motivation in which professional and personal contact information, an email address and a cell phone number are indicated;
- a curriculum vitae;
- a list of works/publications over the last 5 years;
- a public declaration of interest to be completed on the ministerial portal DPI SANTE accessible via the link https://dpi-declaration.sante.gouv.fr/dpi-webapp/app/candidature/index
The application must be sent before April 16, 2023 to the following address CES_malformations@santepubliquefrance.fr
The investigation of these different alerts is complex, as it requires both a clinical and epidemiological validation. It is indeed necessary to ensure, during the first stages of the investigations, that all diagnosed congenital anomalies in the different identified newborns belong to the same nosological entity, or share the same etiology or a common risk factor.
The absence of a register in certain areas requires the use of tools and methods for collecting data and validating complex cases. Methodological challenges are also faced; due to the wide extend of the exposure period from the preconception phase to pregnancy, the general social concerns related to maternal, newborns’ health, and ethical challenges to ensure the protection of families’ privacy and in sensitive situations of a posteriori interviews with families of deceased children.
Moreover, the risk factors for congenital anomalies are poorly understood with more than 50% remain of unknown cause. When the mechanism of the occurrence has been identified, it often results from the effect of multiple factors of a genetic, infectious nature or relating to a maternal pathology or exposure to teratogens (such as pesticides) before or during pregnancy. Finally, the low number of cases diagnosed in certain clusters of reported cases limits the statistical power during investigations, which hinders the possibilities of identifying causal effect with an exposure to risk factors.
It is essential that the agency be able to provide public health responses, with the objectives of improving perinatal health and recommending measures to protect the health of women, newborns and their families. These responses must be based on independence, scientific robustness and the use of the latest available knowledge. It is therefore necessary to call upon a committee of multidisciplinary experts, able to formulate, in coherence with the Charter of health expertise, opinions and recommendations to the public authorities and to the other actors of perinatal health on the actions to be implement.
In addition, to ensure adequate surveillance of congenital anomalies, Santé publique France, in collaboration with the congenital anomalies surveillance registers, will develop a work program in which themes of high public health matters will be defined and prioritized over the coming years.
“In its field of competence and to carry out its missions, the agency implements expertise that meets the principles set out in Article L. 1452-1. Its opinions and recommendations are given in compliance with the provisions of Article L. 1452-2. Subject to respect for privacy and secrets protected by law, in particular the rules relating to the protection of national defense secrets, its opinions and recommendations are made public.
The mission of the Committee will be to provide advice and recommendations on:
- the management of different alerts
- validation of suspected spatio-temporal aggregates
- validation of abnormal trends of the prevalence of congenital anomalies
- the work program and deliverables for the surveillance of congenital anomalies
The committee may also assist the Agency on other matters for which the support of the Expert Committee is deemed necessary. It may thus be required to interact with other committees set up within the Agency that could provide complementary expertise in the field of congenital anomaly surveillance, such as the Health-Environment-Work Expert Committee.
Expected deliverables
- Give clear definition of what is considered as a suspected spatio-temporal clustering or abnormal evolution of the prevalence of one or more groups or subgroups of congenital anomalies for the committee to examine,
- develop a standardized questionnaire to be used for investigations,
- produce an advice and recommendations for each case of suspected clustering,
- produce an advice and recommendations on abnormal spatial and temporal trends in the prevalence of congenital anomalies and
- produce an advice and recommendations on the work program of congenital anomalies surveillance.
Specific expected deliverables
- For event exposures to a risk factor in a given area:
- To determine the relevant groups or subgroups of congenital anomalies to be monitored;
- to establish a methodology for this surveillance (in particular the relevant data sources to be mobilized) and the duration of this surveillance, depending on the temporality of the exposure to the risk factor
- For the suspected spatio-temporal clustering:
- Determine the minimum number of cases and spatial-temporal perimeter required to start an investigation;
- determine the relevant group or subgroup of anomaly to be studied;
- determine the most appropriate statistical methods to analyze spatio-temporal clustering and
- identify possible risk factors for the concerned group or subgroup of congenital anomalies
- For prevalence changes:
- Determine the criteria for a change in prevalence to be considered as abnormal;
- Draw hypothesis that can explain these changes in prevalence that might require further investigation or study and
- Suggest a work frame methodology aimed at investigating these changes in prevalence and identifying the potentially associated causes.
- Regarding the work program:
- Identify priority surveillance and research themes for the next 5 years, based on the available epidemiological data and the up to date knowledge regarding surveillance and risk factors for congenital anomalies.
This committee will consist of about fifteen members, appointed by the Director General of Santé publique France. The members of the committee will sit in their own name (intituiae personae) and cannot be replaced.
The diversity of the required skills in this committee should allow for a multidisciplinary and complementary expertise, in order to be able to provide a global and structured response to the various situations presented to it. The targeted profiles are qualified experts at the national and international level, French or English speaking, with a sufficient level of French and/or English to follow the debates and ensure a comprehensive examination of the documents related to the field of public health and perinatal and early childhood health.
General Competencies
- Ability to work in a collegial and multidisciplinary manner, or within groups of experts.
- Very good knowledge of public health approaches.
- Experience in formulating operational responses for decision-makers, prevention and health promotion actors and the public.
- Very good knowledge of issues related to perinatal and early childhood health.
- Very good knowledge of risk factors for the occurrence of congenital anomalies.
- Experience in conducting critical reviews of the literature.
Specific skills related to perinatal health and the occurrence of congenital anomalies in:
- Epidemiology (descriptive, analytical, evaluative)
- Biostatistics (in particular the use of methods for the spatio-temporal aggregates analysis and statistical methods applicable to the epidemiological surveillance of rare health events)
- Public health with expertise in data sources that can be used for the surveillance of congenital anomalies (surveillance registries, medico-administrative databases)
- Public health in charge of registration and coding of congenital anomalies
- Genetics and syndromology
- Obstetrics (including prenatal diagnosis)
- Pediatrics/Pediatric Surgery
- Toxicology
- Environmental and nutritional epidemiology (expertise on risks related to exposures during the preconceptional period and pregnancy)
- Infectious epidemiology (expertise on risks related to exposures) during the preconceptional period and pregnancy
- Pharmacology and pharmacoepidemiology
- Humanities and Social Sciences
- Veterinary sciences
A chairperson will be appointed by the members of the committee and will be responsible for its management, in collaboration with the experts in the field at Santé publique France.
The composition of this committee will be published on the Santé publique France website.
Term of office
Committee members will be appointed for 4 years.
Required availability
One meeting will be held at the Saint Maurice site for the kickoff of the scientific experts committee and a minimum of four meetings will be performed per year by videoconference. Exchanges by email will take place between meetings as needed.
Workload
In order for the experts to be able to produce their opinions and recommendations, data on the epidemiological surveillance and literature review will be provided by Santé publique France professionals. The consultation of these documents may require extra time by the experts outside the meetings. Members will sign a "Confidentiality and Commitment to Participate in Meetings Clause" and agree to participate regularly in meetings and to take part in any drafting or proofreading required work. The Director General of Santé publique France will provide them with the resources necessary for the committee to function.
The committee may hold hearings with any person whose knowledge and experience are considered necessary for its mission, subject to the submission of a public declaration of interest in DPI and its analysis.
Scientific and administrative support of the committee
It will be provided by the congenital anomalies surveillance team of the Noncommunicable Diseases and Trauma Directorate of Santé publique France.
Allowances and travel expenses
Travel and subsistence expenses are reimbursed under the conditions provided by the State. Compensation for loss of income in the case of self-employment and compensation for time spent attending meetings and for work done will be based on the scale established by the Board of Directors of Santé publique France.
The selection of the applications to the experts’ committee on congenital anomalies will be based on the elements provided in the letter of motivation, the adequacy of the candidates with the sought competences, the analysis of the links of interests and the necessary multidisciplinarity and plurality of the group to treat the entire of the presented cases. Only complete applications will be considered.
Members of the Scientific Council, the Ethics and Professional Conduct Committee and the Orientation and Dialogue Committee of Santé publique France are not eligible to apply, as well as members of other committees of the Agency. The exclusion criteria concern candidates who have not been professionally active for more than three years, as these situations do not allow them to update their skills and knowledge in their field.
The declarations of interest will be examined by the Santé publique France Internal Ethics Committee. Please note: taking into account the good practices for the prevention of conflicts of interest in force within Santé publique France, the receipt of personal remuneration from industrialists within the scope of the Committee's missions and participation in scientific or strategic advisory activities of these same industrialists represent a proven conflict of interest that is incompatible with appointment to the Committee.
Members will be appointed by decision of the Director General of Santé publique France. Candidates will be informed of the outcome of the examination of their application by e-mail from the administrative support of this committee and the DPI of the members of the Expert Committee on Congenital Anomalies are published on the DPI SANTE portal.
Your personal data is processed under the responsibility of Santé publique France. Their processing is based on the execution of pre-contractual measures related to the application by the person concerned to the scientific expert committee on congenital anomalies.
- For unsuccessful candidates: the CV and application file will be deleted within three months of the end of the selection procedure;
- For successful applicants to the committee:
- CVs and application files will be kept for up to one year after the end of your term of office as part of your participation in the committee;
- certain financial elements (bank account details, proof of identity, etc.) that may be requested at a later date, as they are necessary for the payment of your travel expenses and allowances, must, in accordance with the law, be kept for 5 years after the last payment.
The data will be processed by competent agents of Santé publique France and by its subcontractors who will have access to this information within the limits of what is necessary for the execution of their missions.
You may exercise your rights of opposition, access and rectification, deletion and limitation of the processing of personal data by contacting Santé publique France, Data Protection Officer, 12 rue du Val d'Osne, 94415 Saint Maurice Cedex or dpo@santepubliquefrance.fr (mention the name of your committee).
You can exercise your right of access, rectification and limitation concerning the other data by also contacting Santé publique France, data protection officer, 12 rue du Val d'Osne, 94415 Saint Maurice Cedex or dpo@santepubliquefrance.fr (mention the name of your committee).
If you feel that your data rights have not been respected, you can file a complaint with the National Commission for Data Processing and Liberties. For more information on these treatments: dpo@santepubliquefrance.fr