Abstract
ObjectiveThe aim of this prospective pilot study is to establish an initial database to register patients diagnosed with different types of childhood glaucoma and the set-up of a national registry for childhood glaucoma (ReCG) in Germany. 28 children with different types of diagnosed childhood glaucoma, who were admitted and treated at the Childhood Glaucoma Center of the University Medical Center Mainz, Germany were included. Main outcome measures were the type of childhood glaucoma, mean intraocular pressure (IOP) and genetic data of the patients.ResultsThe documents and questionnaires for each individual included: informed consent form of the parents, medical history form of the child, patient’s gestational history questionnaire and general anesthesia examination form. Primary congenital and secondary childhood glaucoma were revealed in 11 (39%) and 17 (61%) patients, respectively. The mean IOP measured with Perkins tonometer in all patients under general anesthesia at the time of inclusion was 17.5 ± 11.8 mmHg in the right and 17 ± 8.9 mmHg in the left eyes. In 33% of children with glaucoma mutations in the CYP1B1, FOXC1, LTBP2 and TEK genes were found. The development of specific questionnaires for childhood glaucoma provides detailed baseline data to establish a ReCG in Germany for the first time.
Highlights
Childhood glaucoma is a varied group of rare serious diseases
The standard treatment of congenital glaucoma is the surgical opening of the angle structures to lower intraocular pressure (IOP) [15–17]
The created forms and questionnaires included: 1. Agreement form from the parents to participate in the pilot study with purpose of creating registry for childhood glaucoma (ReCG) and storing and evaluating the study-related personal health data of their child in a pseudonymized way in paper and electronic form on a secure server of the Mainz University Medical Center as well as a separate agreement form for children younger or older than 12 years
Summary
Childhood glaucoma is a varied group of rare serious diseases. The incidence of this disorder differs regionally. One case occurs in 10,000–38,000 live births in Europe, North America, and Australia [1–6]. The highest prevalence can be found in slovakian gypsies (1:1250) [7], in Saudis (1:3030) [1, 8] and in Southern India (1:3300) [9]. Childhood glaucoma is responsible for more than 18% of childhood blindness worldwide [3, 10–14]. Childhood glaucoma is a rare disease in most regions, and etiology and pathogenesis of this disease are only partly known. The standard treatment of congenital glaucoma is the surgical opening of the angle structures to lower intraocular pressure (IOP) [15–17]. The available epidemiological, clinical and therapeutic data on childhood glaucoma are still insufficient [18]
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