Parental Coping With Challenging Behavior in Mucopolysaccharidosis Type I-III

University Hospital Heidelberg

Status: Completed

Conditions: Mucopolysaccharidosis Type III; Behavior Disorders; Coping Behavior; Mucopolysaccharidosis Type II; Mucopolysaccharidosis Type I

Treatments: Other: This is an observational study

Study type: Observational

Funder types: Other

Identifiers

NCT03161171

01

Details and patient eligibility

About

The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies

Full description

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.

Enrollment: 34 patients

Sex: All

Ages: Under 18 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Diagnosis of mucopolysaccharidosis type I, II or III
• Written informed consent
• Patient is registered at the German Society for Mucopolysaccharidosis

Exclusion criteria

• Patient / Family does not give written informed consent.