The Paediatric Cataract Register (PECARE): an overview of operated childhood cataract in Sweden and Denmark

Aim To report basic epidemiological data concerning surgically treated childhood cataract in Sweden and Denmark. Methods Data were derived from the Paediatric Cataract Register ( PECARE ), a binational, web‐based surgical register representing Sweden and Denmark. All children operated before 8 years of age between 1 January 2007 and 31 December 2013 were included. Age‐specific prevalence per 100 000 population was calculated. Results A total 574 operations in 213 boys (51.7%) and 199 girls (48.3%), altogether 412 children, were registered, the vast majority ( n  =   395/412; 95.9%) being individuals with congenital/infantile cataract. Of these 412, a total of 294 (147 boys and 147 girls) were Swedish and 118 (66 boys and 52 girls) were Danish. The age‐specific prevalence of operated cataract in Sweden was 31/100 000 and in Denmark 28/100 000. In 454 of 574 eyes (79.1%), the cataract was dense. Altogether, 266 of 574 (46.3%) were operated during the first year of life, 193 during the first 12 weeks representing 33.6% of all operations. A primary intraocular lens ( IOL ) implantation was done in altogether 411 of 574 eyes (71,6%). In total, 210 unilateral cataract operations (210/574; 36.6%) were performed. Persistent fetal vasculature ( PFV ) was present in 64 of 193 (33.1%) of those with a congenital unilateral cataract. In 84 individuals (84/395; 21.3%) with congenital or infantile cataract, a coexisting disorder was found. Conclusion The age‐specific binational prevalence of operated congenital/infantile cataract in Sweden and Denmark is 30/100 000. About half of the operations are performed within the first year of life, one‐third within the first 3 months. In our study population, a primary IOL was implanted in the majority of cases.