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Data saves lives: optimising routinely collected clinical data for rare disease research.

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Title: Data saves lives: optimising routinely collected clinical data for rare disease research.
Authors: Solebo AL; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK. a.solebo@ucl.ac.uk.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK. a.solebo@ucl.ac.uk.; Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK. a.solebo@ucl.ac.uk., Hysi P; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Section of Ophthalmology, School of Life Course Sciences, King's College London, London, UK.; Department of Twin Research and Genetic Epidemiology, School of Life Course Sciences, King's College London, London, UK., Horvat-Gitsels LA; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK., Rahi JS; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK.; Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.; Institute of Ophthalmology, University College London and NIHR Moorfields Biomedical Research Centre London, London, UK.
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2023 Sep 11; Vol. 18 (1), pp. 285. Date of Electronic Publication: 2023 Sep 11.
Publication Type: Letter; Research Support, Non-U.S. Gov't
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Data saves lives: optimising routinely collected clinical data for rare disease research.
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  Data: <searchLink fieldCode="AU" term="%22Solebo+AL%22">Solebo AL</searchLink>; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK. a.solebo@ucl.ac.uk.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK. a.solebo@ucl.ac.uk.; Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK. a.solebo@ucl.ac.uk.<br /><searchLink fieldCode="AU" term="%22Hysi+P%22">Hysi P</searchLink>; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Section of Ophthalmology, School of Life Course Sciences, King's College London, London, UK.; Department of Twin Research and Genetic Epidemiology, School of Life Course Sciences, King's College London, London, UK.<br /><searchLink fieldCode="AU" term="%22Horvat-Gitsels+LA%22">Horvat-Gitsels LA</searchLink>; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK.<br /><searchLink fieldCode="AU" term="%22Rahi+JS%22">Rahi JS</searchLink>; Population, Policy and Practice Research and Teaching Department, Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK.; Ulverscroft Vision Research Group, Great Ormond Street Institute of Child Health, University College London, London, UK.; Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.; Institute of Ophthalmology, University College London and NIHR Moorfields Biomedical Research Centre London, London, UK.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2023 Sep 11; Vol. 18 (1), pp. 285. <i>Date of Electronic Publication: </i>2023 Sep 11.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22BioMed+Central%22">BioMed Central </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101266602 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1750-1172 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2217501172%22">17501172 </searchLink><i>NLM ISO Abbreviation: </i>Orphanet J Rare Dis <i>Subsets: </i>MEDLINE
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        Value: 10.1186/s13023-023-02912-1
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      – Code: eng
        Text: English
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        StartPage: 285
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      – TitleFull: Data saves lives: optimising routinely collected clinical data for rare disease research.
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              Text: 2023 Sep 11
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