June 2021
Volume 62, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2021
National registry for childhood glaucoma in Germany: feasibility, clinical care and research (pilot study)
Author Affiliations & Notes
  • Esther M Hoffmann
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
  • Fidan Aghayeva
    Dept. of Ophthalmology, National Centre of Ophthalmology, Baku, Azerbaijan
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
  • Heidi Diel
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
  • Alexander K Schuster
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
  • Felix M Wagner
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
  • Franz Grehn
    Dept. of Ophthalmology, Universitatsmedizin der Johannes Gutenberg-Universitat Mainz, Mainz, Rheinland-Pfalz, Germany
    Dept. of Ophthalmology, Würzburg, Germany
  • Footnotes
    Commercial Relationships   Esther Hoffmann, Allergan (C), Heidelberg Engineering (R), Novartis (R), Santen (C); Fidan Aghayeva, None; Heidi Diel, None; Alexander Schuster, None; Felix Wagner, None; Franz Grehn, None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science June 2021, Vol.62, 3404. doi:
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      Esther M Hoffmann, Fidan Aghayeva, Heidi Diel, Alexander K Schuster, Felix M Wagner, Franz Grehn; National registry for childhood glaucoma in Germany: feasibility, clinical care and research (pilot study). Invest. Ophthalmol. Vis. Sci. 2021;62(8):3404.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : The aim is to investigate epidemiological data, risk factors and treatment of childhood glaucoma in Germany. For this purpose, an initial database to register patients diagnosed with different types of childhood glaucoma was established from 2017 until 2019 as part of a prospective clinical cohort study. The intention is to create a national registry for childhood glaucoma in Germany

Methods : Twenty-eight children with different types of childhood glaucoma, who were admitted and treated at the Childhood Glaucoma Center of the University Medical Center Mainz, Germany, were included. Documents and questionnaires for the acquisition and storage of epidemiological and clinical data were developed and checked for feasibility and practicability in the clinical routine. Furthermore, each child and their parents were offered a genetic testing for known genes that cause childhood glaucoma. The test was carried out in cooperation with the Institute of Human Genetics of the University Medical Center in Mainz and was paid for by the statutory health insurance.

Results : The individual documents and questionnaires included: Informed consent form from the parents, medical history form of the child, patient’s gestational history questionnaire and examination form of the examination under general anesthesia (EUAF). Primary congenital glaucoma (PCG) and secondary childhood glaucoma (SCG) were revealed in 11 (39.3%) and 17 (60.7%) patients, respectively. The most common cause of SCG was Peters anomaly (41.2%). Bilateral glaucoma was diagnosed in 81.8% (PCG) and 58.8% (SCG) of all patients. In 33.3% of the children mainly these four genes, which are associated with childhood glaucoma, were found: CYP1B1, FOXC1, LTBP2 and TEK.

Conclusions : This pilot study showed good feasibility of data acquisition of glaucoma children and their parents including individually developed documents and questionnaires to provide detailed unique baseline data for a national registry on different types of childhood glaucoma in Germany. In near future, registry data will provide valuable information to identify new risk factors for childhood glaucoma and to evaluate different treatments under real-life condition in Germany

This is a 2021 ARVO Annual Meeting abstract.

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