Sudden unexpected death in infancy (SUDI) is “the death of an infant occurring suddenly when nothing in the known history of the infant could have predicted it”. After complete investigations including the history of the facts as well as all the complementary examinations recommended by the High Authority of Health (biology, imaging…), either a cause explaining the death is found, or no cause is highlighted, we speak then of sudden infant death syndrome (SIDS).
Despite the decrease in SUDI rates observed following prevention campaigns in the early 1990s, SUDI continues to be the leading cause of death among infants aged 1 month to 1 year in developed countries, particularly in France.
Currently, France remains one of the countries with a high rate of SUDI in Europe with 250 to 350 infant deaths per year. A 2009 study showed that 50 to 70% of SUDI remain unexplained deaths; since then, no further data have been published.
Faced with this observation, the Nantes University Hospital in collaboration with the National Association of Referral Centers for Sudden Unexpected Death in Infancy (ANCReMIN) set up in May 2015, a French registry of SUDI.
This brings together all french referral centers taking care of children who died of unexpected infant death in France. This registry covers the entire French territory, including the overseas territories.
In July 2020, a biocollection called “BioMIN” was associated with the data collection. This biocollection collects human biological samples (blood, stool, urine, cerebrospinal fluid and hair) from children who have died of SUDI and for whom the parents have signed a consent form. Samples are centralized once a year at the biological resource center of the Nantes University Hospital.
Since January 2021, the French registry of SUDI has obtained a good evaluation (A for each criteria) by the Registry Evaluation Committee composed of INCA, Inserm and Santé Publique France. This recent evaluation will allow the development of national and international collaborations with research teams to advance knowledge in the field of SUDI.