Hunter Outcome Survey (HOS)

  • STATUS
    Recruiting
  • End date
    Sep 1, 2022
  • participants needed
    2000
  • sponsor
    Shire
Updated on 28 June 2021

Summary

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.

Details
Condition Hunter's Syndrome, Hunter Syndrome (MPS II), hunter syndrome
Clinical Study IdentifierNCT03292887
SponsorShire
Last Modified on28 June 2021

Eligibility

Yes No Not Sure

Inclusion Criteria

Diagnosis of Hunter syndrome (biochemically and/or genetically)
Signed and dated written informed consent, as per either a or b below
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
\. Historical Participants: Signed and dated informed consent from the
participant's LAR (where allowed by relevant individual country or site
regulations/laws)

Exclusion Criteria

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 Participants may re-enroll once they have completed or withdrawn from the other clinical study
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
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If 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.

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Complete 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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