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. |
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| 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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| ISSN: | 1750-1172 |
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| DOI: | 10.1186/s13023-023-02912-1 |
