Ten years of the Hunter Outcome Survey (HOS): insights, achievements, and lessons learned from a global patient registry. (Q33630446)

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28464912%20AND%20SRC:MED&resulttype=core&format=json

19 March 2020

review article

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title

Ten years of the Hunter Outcome Survey (HOS): insights, achievements, and lessons learned from a global patient registry (English)

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https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28464912%20AND%20SRC:MED&resulttype=core&format=json

biomedical investigative technique

19 March 2020

main subject

mucopolysaccharidosis II

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19 March 2020

Anna Tylki-Szymańska

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19 March 2020

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Roberto Giugliani

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19 March 2020

author name string

Joseph Muenzer

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19 March 2020

Paul Harmatz

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19 March 2020

Nancy J Mendelsohn

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19 March 2020

Nathalie Guffon

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19 March 2020

Barbara K Burton

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19 March 2020

Maurizio Scarpa

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19 March 2020

Michael Beck

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19 March 2020

Yvonne Jangelind

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19 March 2020

Elizabeth Hernberg-Stahl

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19 March 2020

Maria Paabøl Larsen

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19 March 2020

Tom Pulles

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19 March 2020

David A H Whiteman

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19 March 2020

language of work or name

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2 May 2017

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Orphanet Journal of Rare Diseases

19 March 2020

published in

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19 March 2020

volume

12

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19 March 2020

page(s)

82

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19 March 2020

issue

1

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Creative Commons Attribution 4.0 International

19 March 2020

copyright license

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on focus list of Wikimedia project

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copyright status

copyrighted

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ScienceSource

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exact match

https://scigraph.springernature.com/pub.10.1186/s13023-017-0635-z

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cites work

The natural history of growth in patients with Hunter syndrome: Data from the Hunter Outcome Survey (HOS).

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

The history and accomplishments of the ICGG Gaucher registry

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Mucopolysaccharidosis type II, Hunter's syndrome.

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

The Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale (HS-FOCUS) Questionnaire: item reduction and further validation

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Early initiation of enzyme replacement therapy for the mucopolysaccharidoses

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

A multicenter, open-label study evaluating safety and clinical outcomes in children (1.4-7.5 years) with Hunter syndrome receiving idursulfase enzyme replacement therapy

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Development of a mnemonic screening tool for identifying subjects with Hunter syndrome

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Diagnosing Hunter syndrome in pediatric practice: practical considerations and common pitfalls

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Hearing loss in patients with mucopolysaccharidosis II: data from HOS - the Hunter Outcome Survey

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Orthopedic manifestations in patients with mucopolysaccharidosis type II (Hunter syndrome) enrolled in the Hunter Outcome Survey

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Importance of surgical history in diagnosing mucopolysaccharidosis type II (Hunter syndrome): data from the Hunter Outcome Survey

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Home treatment with intravenous enzyme replacement therapy with idursulfase for mucopolysaccharidosis type II - data from the Hunter Outcome Survey

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Multidisciplinary management of Hunter syndrome.

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Mortality and cause of death in mucopolysaccharidosis type II-a historical review based on data from the Hunter Outcome Survey (HOS).

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Recognition and diagnosis of mucopolysaccharidosis II (Hunter syndrome).

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Management guidelines for mucopolysaccharidosis VI.

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

A phase II/III clinical study of enzyme replacement therapy with idursulfase in mucopolysaccharidosis II (Hunter syndrome)

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Fabry disease defined: baseline clinical manifestations of 366 patients in the Fabry Outcome Survey

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Prevalence of lysosomal storage disorders

28 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5414331

Translating rare-disease therapies into improved care for patients and families: what are the right outcomes, designs, and engagement approaches in health-systems research?

28 July 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Disease registries and outcomes research in children: focus on lysosomal storage disorders

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Fabry disease: baseline medical characteristics of a cohort of 1765 males and females in the Fabry Registry.

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

International Morquio A Registry: clinical manifestation and natural course of Morquio A disease.

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Initial report from the Hunter Outcome Survey

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Bone marrow transplantation in children with Hunter syndrome: outcome after 7 to 17 years.

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

First experience of enzyme replacement therapy with idursulfase in Spanish patients with Hunter syndrome under 5 years of age: case observations from the Hunter Outcome Survey (HOS).

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

The effect of idursulfase on growth in patients with Hunter syndrome: data from the Hunter Outcome Survey (HOS).

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Idursulfase treatment of Hunter syndrome in children younger than 6 years: results from the Hunter Outcome Survey

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

The Hunter syndrome-functional outcomes for clinical understanding scale (HS-FOCUS) questionnaire: evaluation of measurement properties

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Neurocognitive clinical outcome assessments for inborn errors of metabolism and other rare conditions

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease.

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Pompe disease: Design, methodology, and early findings from the Pompe Registry

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Incidence and timing of infusion-related reactions in patients with mucopolysaccharidosis type II (Hunter syndrome) on idursulfase therapy in the real-world setting: A perspective from the Hunter Outcome Survey (HOS)

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0635-Z

Intravenous enzyme replacement therapy: better in home or hospital?

21 January 2018

1 reference

12 December 2020

[Follow-up of patients with Hunter syndrome: the Hunter Outcome Survey (HOS) registry]

1 reference

12 December 2020

Cumulative incidence rates of the mucopolysaccharidoses in Germany

1 reference

12 December 2020

The MPS I registry: design, methodology, and early findings of a global disease registry for monitoring patients with Mucopolysaccharidosis Type I

1 reference

12 December 2020

A phase I/II clinical trial of enzyme replacement therapy in mucopolysaccharidosis II (Hunter syndrome)

1 reference

12 December 2020

Prevalence and characterization of cardiac involvement in Hunter syndrome

1 reference

12 December 2020

Long-term, open-labeled extension study of idursulfase in the treatment of Hunter syndrome

1 reference

12 December 2020

10.1186/S13023-017-0635-Z

Identifiers

DOI

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Dimensions Publication ID

19 March 2020

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19 March 2020

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