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Published on: May 25, 2020
Childhood glaucoma registry in Germany: initial database, clinical care and research (pilot study)
Fidan A Aghayeva1,2, Alexander K Schuster1, Heidi Diel1
1Department of Ophthalmology, University Medical Center of the Johannes Gutenberg, University Mainz, Mainz, Germany.
Insights
This pilot study established a German national registry for childhood glaucoma, collecting data on 28 children. Findings include glaucoma types, intraocular pressure, and genetic mutations, aiding future research.
Area of Science:
- Ophthalmology
- Genetics
- Pediatrics
Background:
- Childhood glaucoma is a rare condition requiring specialized registries.
- Germany lacked a national registry for childhood glaucoma prior to this study.
Purpose of the Study:
- To establish an initial database for childhood glaucoma patients in Germany.
- To set up a national registry for childhood glaucoma (ReCG).
- To collect baseline data including glaucoma type, intraocular pressure (IOP), and genetic information.
Main Methods:
- Prospective pilot study involving 28 children diagnosed with childhood glaucoma.
- Data collection included patient history, gestational history, and general anesthesia examination.
- Intraocular pressure (IOP) measured using Perkins tonometer under general anesthesia.
Main Results:
- 11 (39%) patients had primary congenital glaucoma, and 17 (61%) had secondary childhood glaucoma.
- Mean IOP was 17.5±11.8 mmHg (right eye) and 17±8.9 mmHg (left eye).
- Genetic mutations in CYP1B1, FOXC1, LTBP2, and TEK genes were identified in 33% of children.
Conclusions:
- The study successfully initiated a national registry for childhood glaucoma in Germany.
- Detailed baseline data were collected, providing a foundation for future research and patient care.
- The findings highlight the importance of genetic factors in childhood glaucoma.
Objective:
The 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.
Results:
The 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.
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