MPS VI Clinical Surveillance Program (CSP)
Participate in the MPS VI Clinical Surveillance Program
The MPS VI CSP is an ongoing, observational, multinational database containing the medical history and treatment outcomes of individuals with MPS VI. Because MPS VI is a rare disease, the information gathered will help clinicians learn from the collective experience to better understand, treat, and manage MPS VI. Treatment with NAGLAZYME® (galsulfase) is not a prerequisite for participation.
Program objectives include:
- Advance MPS VI treatment and research
- Optimize care
- Enrich clinical understanding of MPS VI
- Evaluate long-term safety, efficacy of NAGLAZYME
- Provide a comprehensive MPS VI resource for physicians
- Further understanding of the variable presentation and progression of MPS VI
- Collect worldwide data for a centralized database
- Offer longitudinal data on MPS VI
- Optimize patient care
- Develop new patient-monitoring standards
- Report outcomes
- Devise new assessment tools based on global feedback from MPS VI experts
Participation is easy
- All MPS VI patients and physicians are encouraged, but not required to participate
- No experimental treatments or assessments are involved
- The only requirements to enroll a patient is a confirmed MPS VI diagnosis, appropriate institutional approval, and patient or legal guardian consent
- Data collection for the program includes standard assessments that most physicians are already recording
To enroll patients or obtain enrollment support or information, please call 866-906-6100 or e-mail : bpps@bmrn.com
BioMarin Patient and Physician Support
For orders, billing, reimbursement, adverse events reports, or other issues: 866-906-6100/ bpps@bmrn.com
Next: Patient advocacy/support groups