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Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.

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Title: Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.
Authors: Lilly L; Vertex Pharmaceuticals Incorporated, Boston, MA, USA., Brown D; Vertex Pharmaceuticals Incorporated, Boston, MA, USA., Li N; Vertex Pharmaceuticals Incorporated, Boston, MA, USA., Drahos J; Vertex Pharmaceuticals Incorporated, Boston, MA, USA. jennifer_drahos@vrtx.com., Calvert M; Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.; National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.; NIHR Blood and Transplant Research Unit in Precision Transplant and Cellular Therapeutics, University of Birmingham, Birmingham, UK.; Birmingham Health Partners Centre for Regulatory Science and Innovation, Centre of Excellence in Regulatory Science and Innovation for Advanced Therapies (CERSI-AT), University of Birmingham, Birmingham, UK.; LifeArc Centre for Acceleration of Rare Disease Trials, University of Birmingham, Birmingham, UK., Mason A; Sickle Cell Care Manchester, Manchester, UK., Pakbaz Z; Division of Hematology/Oncology, The University of California Irvine School of Medicine, Orange, CA, USA., Shah F; Burjeel Medical City, United Arab Emirates, Khalifa University, Abu Dhabi, UAE., Valentine A; Sick Cells, Washington, DC, USA., Franks B; Prime HCD, Knutsford, Cheshire, UK., Santana IR; Prime HCD, Knutsford, Cheshire, UK.
Source: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2026 Jul 23; Vol. 35 (9). Date of Electronic Publication: 2026 Jul 23.
Publication Type: Journal Article
Journal Info: Publisher: Springer Netherlands Country of Publication: Netherlands NLM ID: 9210257 Publication Model: Electronic Cited Medium: Internet ISSN: 1573-2649 (Electronic) Linking ISSN: 09629343 NLM ISO Abbreviation: Qual Life Res Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.
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  Data: <searchLink fieldCode="AU" term="%22Lilly+L%22">Lilly L</searchLink>; Vertex Pharmaceuticals Incorporated, Boston, MA, USA.<br /><searchLink fieldCode="AU" term="%22Brown+D%22">Brown D</searchLink>; Vertex Pharmaceuticals Incorporated, Boston, MA, USA.<br /><searchLink fieldCode="AU" term="%22Li+N%22">Li N</searchLink>; Vertex Pharmaceuticals Incorporated, Boston, MA, USA.<br /><searchLink fieldCode="AU" term="%22Drahos+J%22">Drahos J</searchLink>; Vertex Pharmaceuticals Incorporated, Boston, MA, USA. jennifer_drahos@vrtx.com.<br /><searchLink fieldCode="AU" term="%22Calvert+M%22">Calvert M</searchLink>; Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.; National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.; NIHR Blood and Transplant Research Unit in Precision Transplant and Cellular Therapeutics, University of Birmingham, Birmingham, UK.; Birmingham Health Partners Centre for Regulatory Science and Innovation, Centre of Excellence in Regulatory Science and Innovation for Advanced Therapies (CERSI-AT), University of Birmingham, Birmingham, UK.; LifeArc Centre for Acceleration of Rare Disease Trials, University of Birmingham, Birmingham, UK.<br /><searchLink fieldCode="AU" term="%22Mason+A%22">Mason A</searchLink>; Sickle Cell Care Manchester, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Pakbaz+Z%22">Pakbaz Z</searchLink>; Division of Hematology/Oncology, The University of California Irvine School of Medicine, Orange, CA, USA.<br /><searchLink fieldCode="AU" term="%22Shah+F%22">Shah F</searchLink>; Burjeel Medical City, United Arab Emirates, Khalifa University, Abu Dhabi, UAE.<br /><searchLink fieldCode="AU" term="%22Valentine+A%22">Valentine A</searchLink>; Sick Cells, Washington, DC, USA.<br /><searchLink fieldCode="AU" term="%22Franks+B%22">Franks B</searchLink>; Prime HCD, Knutsford, Cheshire, UK.<br /><searchLink fieldCode="AU" term="%22Santana+IR%22">Santana IR</searchLink>; Prime HCD, Knutsford, Cheshire, UK.
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  Data: <searchLink fieldCode="JN" term="%229210257%22">Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation</searchLink> [Qual Life Res] 2026 Jul 23; Vol. 35 (9). <i>Date of Electronic Publication: </i>2026 Jul 23.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Springer+Netherlands%22">Springer Netherlands </searchLink><i>Country of Publication: </i>Netherlands <i>NLM ID: </i>9210257 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1573-2649 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2209629343%22">09629343 </searchLink><i>NLM ISO Abbreviation: </i>Qual Life Res <i>Subsets: </i>MEDLINE
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        Value: 10.1007/s11136-026-04347-0
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        Text: English
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              Text: 2026 Jul 23
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