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德国儿童青光眼登记处:初始数据库、临床护理和研究(试点研究)。

Childhood glaucoma registry in Germany: initial database, clinical care and research (pilot study).

机构信息

Department of Ophthalmology, University Medical Center of the Johannes Gutenberg, University Mainz, Mainz, Germany.

National Centre of Ophthalmology Named After Academician Zarifa Aliyeva, Baku, Azerbaijan.

出版信息

BMC Res Notes. 2022 Feb 10;15(1):32. doi: 10.1186/s13104-022-05921-8.

DOI:10.1186/s13104-022-05921-8
PMID:35144644
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8830121/
Abstract

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.

摘要

目的

本前瞻性初步研究旨在建立一个初始数据库,以登记诊断为不同类型儿童青光眼的患者,并在德国建立儿童青光眼登记处(ReCG)。纳入德国美因茨大学医学中心儿童青光眼中心收治和治疗的 28 名患有不同类型儿童青光眼的儿童。主要观察指标为儿童青光眼的类型、平均眼内压(IOP)和患者的遗传数据。

结果

每位患者的文件和问卷包括:家长知情同意书、儿童病史表、患者妊娠史问卷和全身麻醉检查表。原发性先天性和继发性儿童青光眼分别在 11 例(39%)和 17 例(61%)患者中发现。在纳入时全身麻醉下所有患者用 Perkins 眼压计测量的右眼平均眼压为 17.5±11.8mmHg,左眼为 17±8.9mmHg。在 33%的青光眼儿童中发现 CYP1B1、FOXC1、LTBP2 和 TEK 基因突变。为儿童青光眼制定特定的问卷提供了详细的基线数据,首次在德国建立儿童青光眼登记处。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5c3a/8830121/477fa0441912/13104_2022_5921_Fig1a_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5c3a/8830121/477fa0441912/13104_2022_5921_Fig1a_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5c3a/8830121/477fa0441912/13104_2022_5921_Fig1a_HTML.jpg

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Ophthalmologe. 2020 Mar;117(3):210-214. doi: 10.1007/s00347-019-01002-7.
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[Status and perspectives of registry-based studies in German ophthalmology].[德国眼科基于登记处研究的现状与展望]
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Clinical Registries in Ophthalmology.眼科学临床注册。
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Causes of childhood low vision and blindness in New Zealand.新西兰儿童低视力和盲的病因。
Clin Exp Ophthalmol. 2019 Mar;47(2):165-170. doi: 10.1111/ceo.13443. Epub 2019 Jan 4.
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New classification system for pediatric glaucoma: implications for clinical care and a research registry.小儿青光眼新分类系统:对临床护理和研究登记的影响。
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