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The Hunter Syndrome Outcome Survey (HOS) is an ongoing observational, international, multi-center, long-term database of patients with Hunter syndrome. HOS collects information from patients about the course of their disease, their medical management, and the use of current or past medications or treatments, if any. The principal aim of HOS is to use the data collected to better understand the progression of the disease, its long-term response to treatment, and possibly improve how patients are cared for.
Patients of any age or gender with Hunter syndrome may participate in the study.
Males and Females: All ages
No experimental intervention is involved. Patients undergo clinical assessments and receive care as determined by the patients' treating physician, who is also responsible for recording relevant data into the HOS database. Participants may be asked to complete a Health-Related Quality of Life Questionnaire called the HS-FOCUS to assess changes in their physical functioning and quality of life.
Visits: None beyond normal clinical care
Shire Human Genetic Therapies
Study Description at National Institutes of Health
Medical Genetics Research
Damara Ortiz, MD
For more information about the study or enrollment, please contact:
Nadene Henderson, MS, LCGC
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
With myCHP, you can request appointments, review test results, and more.
For questions about a hospital bill call:
To pay your bill online, please visit UPMC's online bill payment system.
Interested in giving to Children's Hospital? Visit Children's Hospital of Pittsburgh Foundation's website to make a donation online.