Mucopolysaccharidosis I (MPS I) Registry
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- STATUS
- Recruiting
-
- End date
- Jan 31, 2034
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- participants needed
- 1500
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- sponsor
- Genzyme, a Sanofi Company
Summary
The Mucopolysaccharidosis I (MPS I) Registry is an ongoing, observational database that tracks the outcomes of patients with MPS I. The data collected by the MPS I Registry will provide information to better characterize the natural history and progression of MPS I as well as the clinical responses of patients receiving enzyme replacement therapy, such as Aldurazyme (Recombinant Human Alpha-L-Iduronidase), or other treatment modalities.
The objectives of the Registry are:
- To evaluate the long-term effectiveness and safety of Aldurazyme (laronidase)
- To characterize and describe the MPS I population as a whole, including the variability, progression, and natural history of MPS I
- To help the MPS I medical community with the development of recommendations for monitoring patients and reports on patient outcomes to optimize patient care
Description
The MPS I Registry is an international program; in addition to the central contact information provided under the "Location" heading, patients may contact:
- In Asia-Pacific - Vivian Liu, +65-6431-2548, Vivian.liu@genzyme.com
- In Europe - +31-35-699-1232, europe@mpsiregistry.com
- In Latin America - +617-591-5500, help@mpsiregistry.com
- In North America - +617-591-5500, help@mpsiregistry.com
Details
| Condition | Hurler's Syndrome |
|---|---|
| Age | 100years or below |
| Clinical Study Identifier | NCT00144794 |
| Sponsor | Genzyme, a Sanofi Company |
| Last Modified on | 19 February 2024 |
How to participate?
Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.
Learn moreIf you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.
Learn moreComplete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.
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