Hunter Outcome Survey (HOS)
| Status: | Recruiting |
|---|---|
| Conditions: | Metabolic, Metabolic |
| Therapuetic Areas: | Pharmacology / Toxicology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 3/21/2019 |
| Start Date: | August 1, 2005 |
| End Date: | September 1, 2022 |
| Contact: | Shire Contact |
| Email: | ClinicalTransparency@shire.com |
| Phone: | +1 866 842 5335 |
Hunter Outcome Survey: A Global, Multi-Center, Long-Term, Observational Registry of Patients With Hunter Syndrome (Mucopolysaccharidosis Type II, MPS II)
The purpose of this study is to collect data that will increase understanding of Hunter
syndrome. The data from HOS may provide guidance to healthcare professionals about disease
treatment options.
syndrome. The data from HOS may provide guidance to healthcare professionals about disease
treatment options.
Inclusion Criteria:
1. Diagnosis of Hunter syndrome (biochemically and/or genetically)
2. Signed and dated written informed consent, as per either a or b below:
1. Prospective Participants: Signed and dated written informed consent from the
participant or, for participants aged less than (<) 18 years (<16 years in
Scotland), parent and/or participant's legally authorized representative (LAR),
and assent of the minor where applicable.
informed consent must be obtained from LARs for cognitively impaired
participants, where applicable.
OR
2. Historical Participants: Signed and dated informed consent from the participant's
LAR (where allowed by relevant individual country or site regulations/laws). .
Exclusion Criteria:
1. Participants enrolled in an interventional clinical trial are not eligible.
Participants may re-enroll once they have completed or withdrawn from the other
clinical study.
2. Participants receiving treatment for Hunter syndrome with an ERT product other than
Elaprase are not eligible. Participants may enroll or re-enroll once they have stopped
treatment with another ERT.
We found this trial at
1
site
Click here to add this to my saved trials
