相关实验视频

Updated: Jun 24, 2025

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Published on: January 12, 2019

从患者的角度来看,达里尔病的未满足需求:从德国登记处学到的教训

Danielle Rogner^1,2, Laura Heimerl³, Tilo Biedermann³

¹Department of Dermatology and Allergy, School of Medicine, Technical University of Munich, Munich, Germany. daniellefranziska.rogner@mri.tum.de.

Acta dermato-venereologica

|June 11, 2024

概括

现实世界的数据显示,在达利尔病 (DD) 和海利-海利病 (HH) 护理方面,存在重大未满足的需求. 许多患者经历了烦人的症状和对当前治疗的不满,突出了改善治疗的需要.

科学领域:

皮肤病学皮肤病学
遗传性皮肤疾病遗传性皮肤疾病
流行病学流行病学

背景情况:

达里尔病 (DD) 和海利-海利病 (HH) 是一种罕见的遗传性皮肤疾病.
关于这些疾病的管理和患者经验,现实世界的数据有限.

研究的目的:

描述德国DD和HH患者的现实生活情况.
评估患者的人口统计,症状,治疗模式和对医疗保健的满意度.

主要方法:

德国MDHH登记处收集了47名被诊断为DD患者的数据.
数据包括人口统计,主观症状 (,疼痛,灼热) 和治疗评估.
评估了患者对医疗护理和治疗的满意度.

主要成果:

是患者报告的最令人烦的症状.
很大一部分患者要么没有接受全身治疗,要么发现现有疗法无效.
口服视网类药物和皮质类固醇是最常见的全身治疗方法,患者满意度平.

结论:

在DD和HH患者护理方面存在着令人担忧的未满足需求,低满意度和疾病控制不佳表明了这一点.
进一步的研究和治疗干预对于改善治疗选择至关重要.
德国MDHH登记处作为未来临床和流行病学研究的平台.

更多相关视频

TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients

TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients

Published on: April 13, 2021

The Dyspepsia Educational Tool As a Novel Aid in Dyspepsia Management

The Dyspepsia Educational Tool As a Novel Aid in Dyspepsia Management

Published on: June 29, 2019

相关概念视频

Assessment of the Gastrointestinal System I: Subjective Data

Assessment of the Gastrointestinal System I: Subjective Data

Assessing the gastrointestinal (GI) system is a complex process that begins with collecting subjective data. This data, collected through patient interviews, provides crucial insights into the patient's health history, perception patterns, and lifestyle habits, all contributing significantly to GI health.
Health History
The initial step in assessing the GI system is obtaining a comprehensive health history. This includes inquiring about the patient's history or presence of problems...

Inflammatory Bowel Disease III: Diagnostic Studies and Management I-Nutritional Therapy

Inflammatory Bowel Disease III: Diagnostic Studies and Management I-Nutritional Therapy

Various diagnostic tests are employed in the diagnostic process for Inflammatory Bowel Disease (IBD), particularly to differentiate between Crohn's disease and ulcerative colitis.
Diagnostic studies
A colonoscopy is the definitive screening test, distinguishing ulcerative colitis from other colon diseases with similar symptoms. During a colonoscopy test, inflamed mucosa with exudate ulcerations can be observed, and biopsies are taken to determine the histologic characteristics of the...