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Initial report from the Hunter Outcome Survey.

J Edmond Wraith1, Michael Beck, Roberto Giugliani

  • 1From the 1Willink Biochemical Genetics Unit, Royal Manchester Children's Hospital, Manchester, United Kingdom. ed.wraith@cmmc.nhs.uk

Genetics in Medicine : Official Journal of the American College of Medical Genetics
|June 27, 2008
PubMed
Summary
This summary is machine-generated.

The Hunter Outcome Survey (HOS) tracks Hunter syndrome (Mucopolysaccharidosis II), a rare genetic disorder. It aims to improve understanding of the disease

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Area of Science:

  • Genetics and rare diseases
  • Lysosomal storage disorders
  • Biochemical pathways

Background:

  • Hunter syndrome, or Mucopolysaccharidosis II, is a rare X-linked genetic disorder.
  • It results from a deficiency in the iduronate-2-sulfatase enzyme, leading to glycosaminoglycan accumulation.
  • This accumulation contributes to the complex pathophysiology of the syndrome.

Purpose of the Study:

  • To establish the Hunter Outcome Survey (HOS) for a comprehensive understanding of Hunter syndrome.
  • To describe the natural history of this rare genetic disorder.
  • To evaluate the long-term efficacy and impact of enzyme replacement therapy (ERT).

Main Methods:

  • HOS is an international, multicenter, long-term observational study.
  • Data is collected from patients with confirmed Hunter syndrome diagnoses during routine physician visits.
  • An electronic database captures vital signs, lab values, organ involvement, and functional test results.

Main Results:

  • As of May 2007, 263 patients from 16 countries were enrolled in HOS.
  • 24% of enrolled patients were receiving enzyme replacement therapy.
  • Median ages for symptom onset and diagnosis were 1.5 and 3.5 years, respectively, with otitis media and abdominal hernia being early symptoms.

Conclusions:

  • HOS serves as a crucial resource for advancing knowledge of Hunter syndrome.
  • The survey provides valuable insights into the disease's natural progression.
  • It highlights the role of enzyme replacement therapy in managing Hunter syndrome, encouraging patient and physician participation.