VKS/Erasmus MC Mucopolysaccharidosis Survey

VKS/Erasmus MC Mucopolysaccharidosis Survey - VKS/Erasmus MC MPS Survey

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON35162

Enrollment

100

Registered

2010-05-28

Start date

2010-08-02

Completion date

Unknown

Last updated

2024-05-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Hunter's syndrome Hurler's syndrome Maroteaux-Lamy's syndrome Morquio's syndrome mucopolysaccharidosis Sanfilippo's syndrome Sly's syndrome

Interventions

None listed

Eligibility

Age

2 Years to 99 Years

Inclusion criteria

Inclusion criteria: All patients (all ages) who have signed the VKS / Mucopolysaccharidosis Survey patient information and authorization form and have a confirmed diagnosis of mucopolysaccharidosis are eligible for inclusion.

Exclusion criteria

Exclusion criteria: none

Design outcomes

Primary

Measure	Time frame
The results of the Mucopolysaccharidosis Questionnaire will be used to describe the natural course of MPS, the current clinical outcome, the health damage at diagnosis and the effect of treatment. The scores obtained from the standardized questionnaires will be used to measure the consequences of MPS disease on daily activities, quality of life, development and pain and to evaluate. the effects of treatment options.	—

Measure

Time frame

The results of the Mucopolysaccharidosis Questionnaire will be used to describe the natural course of MPS, the current clinical outcome, the health damage at diagnosis and the effect of treatment. The scores obtained from the standardized questionnaires will be used to measure the consequences of MPS disease on daily activities, quality of life, development and pain and to evaluate. the effects of treatment options.

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Countries

Netherlands

Outcome results