跳至主要内容
临床试验/DRKS00032765
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

发起方
niversität Leipzig

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