在伊朗实施甲状腺眼病登记:理由和研究协议
Shadi Akbarian1, Abbas Sheikhtaheri2, Farid Khorrami3
1Skull Base Research Center, Eye Research Center, The Five Senses Institute, Iran University of Medical Science, Tehran, Iran.
Orphanet journal of rare diseases
|February 6, 2024
概括
伊朗的新注册系统收集了关于甲状腺眼病 (TED) 的综合数据,以更好地了解其患病率,特征和治疗结果. 这个倡议旨在提高患者的诊断和生活质量.
科学领域:
- 眼科医生 眼科 眼科
- 内分泌学 在内分泌学.
- 公共卫生 公共卫生
背景情况:
- 甲状腺眼病 (TED) 需要更好地了解其流行病学和临床表现.
- 实施一个强大的注册系统对于收集关于TED患者的全面数据至关重要.
研究的目的:
- 在伊朗建立和实施甲状腺眼病 (TED) 全国登记册.
- 收集有关TED的性质,流行,发病率,病因学和病原学的详细信息.
- 为预后提供信息,并评估医疗/外科治疗的疗效.
主要方法:
- 由IUMS和MOHME批准的协议,分三个阶段实施 (区域,省,国家).
- 成立了一个注册委员会和一个指导委员会,并组建了专家小组.
- 从临床,成像和实验室发现,通过用户友好的,双语的基于Web的软件,追溯和前地收集数据.
主要成果:
- 收集了关于患者人口统计,甲状腺状况,病史和视觉检查的综合数据.
- 开发了一个安全的,基于Web的软件系统 (https://orc.iums.ac.ir) 用于数据输入和访问.
- 实施数据质量控制措施,包括培训人员和软件验证规则.
结论:
- 伊朗的TED注册表提供了有关疾病自然史和表型变异的广泛数据.
- 促进大规模的患者招募和早期诊断,以改善治疗结果.
- 旨在提高甲状腺眼病患者的整体生活质量.
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