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The Lysosomal Disease Network Longitudinal Study of the Mucopolysaccharidoses

Recruiting

The purpose of this study is to examine the changes in the central nervous system over time in both treated and untreated patients with MPS I, II, IV, VI, and VII in both structure and function (including emotional-social characteristics) through the use of brain MRI, neuropsychological testing, and gathering an updated medical history.

I'm interested

All
6 Years and over
This study is NOT accepting healthy volunteers
Inclusion Criteria:

• Any MPS I, II, IV, VI or VII child or adult aged 6 years of age or older
Exclusion Criteria:

• Exclusion Criteria for Neuroimaging:
• Participants with:
• Pacemakers
• Any indwelling electronic device including programmable shunts
• Orthodontic braces unless they are not made of metal
• Other implanted metal in the body other than titanium
• Unable to stay still during MRI because of low cognitive function, behavioral dysregulation, or young age, if the patient is not a clinical patient having sedation/anesthesia
• Pregnancy
• Exclusion Criteria for Neuropsychological and Neurobehavioral Testing
• Participants who:
• Are too functionally impaired for testing

Mucopolysaccharidosis Type I, Mucopolysaccharidosis Type II, Mucopolysaccharidosis Type VI, Mucopolysaccharidosis Type IV, Mucopolysaccharidosis Type VII

Mucopolysaccharidosis, Longitudinal, Brain, Cognition, Quality-of-Life, Hurler syndrome, Hunter syndrome, Hurler-Scheie syndrome, Scheie syndrome, Maroteaux-Lamy syndrome, MPS I, MPS II, MPS VI, Mucopolysaccharidosis type I, Mucopolysaccharidosis type II, Mucopolysaccharidosis type VI, MPS IV, MPS VII, Mucopolysaccharidosis type IV, Mucopolysaccharidosis type VII, Morquio syndrome, Sly syndrome

Ashley Schneider - amwiesen@umn.edu
Chester Whitley, MD, PhD
N/A
STUDY00014153
NCT01870375
See this study on ClinicalTrials.gov

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