Coping Behavior Clinical Trial
Official title:
Behavioral Challenges in Children With Mucopolysaccharidosis Type I-III and Parental Coping Strategies
The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies
This is a prospective, cross-sectional, observational study quantitatively assessing
1. challenging behavior in children with MPS, an orphan, progressive, neurodegenerative
metabolic disorder, and
2. parental coping strategies for this challenging behavior.
Patients registered at the German Society for Mucopolysacchardoses giving written informed
consent are eligible. The study is based on questionnaires. IRB approval was obtained.
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