NEAER - National Esophageal Atresia Epidemiologic Registry
Head :
Sfeir Rony, Reference center for congenital esophageal abnormalities
Last update : 09/21/2020 | Version : 2 | ID : 180
| General | |
| Identification | |
| Detailed name | National Esophageal Atresia Epidemiologic Registry |
| Sign or acronym | NEAER |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 908362 |
| General Aspects | |
| Medical area |
Gastroenterology et hepatology Pediatrics Pneumology Rare diseases |
| Health determinants |
Genetic Geography Lifestyle and behavior Nutrition |
| Keywords | esophageal atresia, epidemiology, congenital malformations |
| Scientific investigator(s) (Contact) | |
| Name of the director | Sfeir |
| Surname | Rony |
| Address | 1 Place Verdun 59037 Lille cedex |
| Phone | + 33 (0)3 20 44 49 74 |
| rony.sfeir@chru-lille.fr | |
| Unit | Reference center for congenital esophageal abnormalities |
| Organization | CHRU |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Funding | |
| Funding status |
Public |
| Details | Centre de Référence des Affections Congénitales et Malformatives de l'Oesophage |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHR Lille |
| Organisation status |
Public |
| Presence of scientific or steering committees |
Yes |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. | Selection of subjects having the required inclusion criteria |
| Database objective | |
| Main objective |
Objectives of the registry in the area of public health (access to pre and postnatal diagnostics, monitoring, caring for patients, evaluation):
1) Determine the prevalence of esophageal atresia and of its various anatomical forms. 2) Study the geographical distribution of this malformation 3) Determine mortality at one year for this malformation 4) Evaluate the disparities in care and the changes between the different centers. Objectives of the registry in the areas of therapy and research: 1) Evaluate if the percentage of antenatal diagnostic and the earliness in care vary in our country over the next few years. 2) Evaluate the effect of the prenatal diagnosis on prevalence. 3) Evaluate the modifications that appeared in the care for newborns having esophageal atresia and the influence of the latter on the future of the patients. Recent modifications in care: installation of a transanatomic sensor, early feeding, abandoning parenteral nutrition, could influence the change (duration of hospitalization, complications) and the future at 1 year. 4) Evaluate the short-term prognosis (surgical complications, duration of hospitalization, duration of reanimation, etc.). 5) Structure and harmonize the care for esophageal atresia across the national territory. |
| Inclusion criteria | Any living newborn with esophageal atresia |
| Population type | |
| Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) |
| Population covered |
Sick population |
| Pathology | Q39 - Congenital malformations of oesophagus |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | Metropolitan France + Overseas Départements/Territories |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2008 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2008 : 149 new cases : enclosed inclusion 2009 : 159 new cases : enclosed inclusion2010 : 96 cases : inclusion in progress |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data Paraclinical data Administrative data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Declarative data (detail) |
Paper self-questionnaire Internet self-questionnaire |
| Administrative data (detail) | - 2 first letters Last name and First name - Date of birth- Hospital of origin- Maternity ward of origin- Postal code (Place of residence)- Date of diagnostic- Sex - Département of birth - Age of the mother at birth |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Regular requests via telephone, contact through email and mail and trips on-site in the 38 centers that form the Epidemiological Network and research on esophageal atresia. |
| Participant monitoring |
Yes |
| Monitoring procedures |
Monitoring by contact with the referring doctor |
| Details on monitoring of participants | Vital statusClinical follow-up: clinical data, para-clinical data, morbidity. |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | department of medical informatic |
| Promotion and access | |
| Promotion | |
| Link to the document | Sfeir et al. - 2013 - Esophageal atresia data from a national cohort.pdf |
| Description | Liste des publications dans Pubmed |
| Link to the document | EJPS_153585rev (2).pdf |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) |
Scientific publications
Congresses and reference center meetings Communication with parents' associations |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
