Description Module
The Description Module contains narrative descriptions of the clinical trial, including a brief summary and detailed description. These descriptions provide important information about the study's purpose, methodology, and key details in language accessible to both researchers and the general public.
Description Module path is as follows:
Study -> Protocol Section -> Description Module
Description Module
Ignite Creation Date:
2025-12-25 @ 1:43 AM
Ignite Modification Date:
2025-12-25 @ 1:43 AM
NCT ID:
NCT00144794
Brief 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
Detailed 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
Study:
NCT00144794
Study Brief:
Protocol Section:
NCT00144794