DRKS00032765招募中不适用
Health-related quality of life in children and adolescents with Medium-chain-acyl-CoA dehydrogenase deficiency (MCADD) - Health-related quality of life in MACDD children
niversität Leipzig0 个研究点目标入组 25 人开始时间: 2023年10月24日最近更新:
适应症
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 25
研究概览
简要总结
暂无简介。
研究设计
- 研究类型
- Observational
入排标准
- 年龄范围
- 0 Years 至 18 Years(—)
- 性别
- All
入选标准
- •MCADD diagnosis by newborn screening and enzymatic and/or genetic confirmation of diagnosis
- •-From birth until 18 years of age
- •-Signed consent (patients and caregivers)
- •-No life-threatening metabolic crisis until study enrollment
排除标准
- •-MCADD diagnosis in the context of a metabolic crisis and not through newborn screening
- •-Patients proved to be heterozygote for MCADD after positive new born screening
- •-Additional severe chronical diseases with regular use of medication or dietary treatment
- •-participation in another interventional trial
研究者
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