The Mucopolysaccharidosis I (MPS I) Registry is a special database that keeps track of health details for people with MPS I, a rare condition caused by the body’s inability to break down certain sugars. This registry helps doctors understand how MPS I progresses over time and how treatments, like enzyme replacement therapy (ERT), work. ERT uses medicines like Aldurazyme to replace missing enzymes in the body. The registry also helps create guidelines for better patient care.
Eligibility: Anyone diagnosed with MPS I can join if they have proof of the condition and complete a patient authorization form. There are no restrictions on joining other studies.
- This is an ongoing study with no end date, allowing for continuous participation.
- No specific visits are required; it mainly involves data collection.
- There is no payment for participating, but it contributes to important research.
Contact details for participation vary by region, such as Asia-Pacific, Europe, Latin America, and North America, with specific emails and phone numbers provided for each.