Centre for Eye Research Australia, Level 7, 32 Gisborne St, East Melbourne, Victoria, 3002, Australia.
Department of Surgery, Ophthalmology, The University of Melbourne, Melbourne, Australia.
BMC Ophthalmol. 2023 Jul 27;23(1):337. doi: 10.1186/s12886-023-03087-w.
The Keratoconus International Consortium (KIC) will allow better understanding of keratoconus.
Keratoconus is a disorder characterised by corneal elevation and thinning, leading to reduced vision. The current gaps in understanding of this disease will be discussed and the need for a multi-pronged and multi-centre engagement to enhance our understanding of keratoconus will be highlighted.
KIC has been established to address the gaps in our understanding of keratoconus with the aim of collecting baseline as well as longitudinal data on several fields.
Keratoconus and control (no corneal condition) subjects from different sites globally will be recruited in the study.
KIC collects data using an online, secure database, which enables standardised data collection at member sites. Data fields collected include medical history, clinical features, quality of life and economic burden questionnaires and possible genetic sample collection from patients of different ethnicities across different geographical locations.
There are currently 40 Australian and international clinics or hospital departments who have joined the KIC. Baseline data has so far been collected on 1130 keratoconus patients and indicates a median age of 29.70 years with 61% being male. A total of 15.3% report a positive family history of keratoconus and 57.7% self-report a history of frequent eye rubbing.
The strength of this consortium is its international, collaborative design and use of a common data collection tool. Inclusion and analyses of cross-sectional and longitudinal data will help answer many questions that remain in keratoconus, including factors affecting progression and treatment outcomes.
角膜圆锥国际联合会(KIC)将有助于更好地了解圆锥角膜。
圆锥角膜是一种以角膜隆起和变薄为特征的疾病,导致视力下降。目前,人们对这种疾病的认识存在差距,需要多方面和多中心的参与,以加强我们对圆锥角膜的认识。
KIC 的成立是为了弥补我们对圆锥角膜认识上的差距,目的是收集几个领域的基线和纵向数据。
将招募来自全球不同地点的圆锥角膜和对照(无角膜疾病)受试者参与这项研究。
KIC 通过在线安全数据库收集数据,使成员单位能够进行标准化的数据收集。收集的数据字段包括病史、临床特征、生活质量和经济负担问卷,以及来自不同地理位置不同种族的患者的可能遗传样本采集。
目前已有 40 家澳大利亚和国际诊所或医院部门加入了 KIC。迄今为止,已经收集了 1130 名圆锥角膜患者的基线数据,中位数年龄为 29.70 岁,男性占 61%。总共有 15.3%的患者报告有阳性的圆锥角膜家族史,57.7%的患者自述经常揉眼。
该联合会的优势在于其国际合作设计和使用共同的数据收集工具。纳入和分析横断面和纵向数据将有助于回答圆锥角膜中仍存在的许多问题,包括影响进展和治疗结果的因素。