Researcher profile · Semantic Scholar

C. Lavery

h-index: 12
Works: 35
Citations: 1,184

Most-cited papers

Recommendations for initiation and cessation of enzyme replacement therapy in patients with Fabry disease: the European Fabry Working Group consensus document
M. Biegstraaten, R. Arngrímsson, F. Barbey, L. Boks +30 more
2015Orphanet Journal of Rare Diseases329 citations Open access
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Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease
M. Scarpa, Z. Almássy, M. Beck, O. Bodamer +22 more
2011Orphanet Journal of Rare Diseases221 citations Open access
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The prevalence of and survival in Mucopolysaccharidosis I: Hurler, Hurler-Scheie and Scheie syndromes in the UK
D. Moore, M. Connock, E. Wraith, C. Lavery
2008Orphanet Journal of Rare Diseases147 citations Open access
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Mortality in patients with morquio syndrome a.
C. Lavery, C. Hendriksz
2015JIMD Reports110 citations
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Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey
C. Hendriksz, C. Lavery, M. Çoker, S. K. Uçar +3 more
2014Orphanet Journal of Rare Diseases88 citations Open access
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Mortality in patients with Sanfilippo syndrome
C. Lavery, C. Hendriksz, S. Jones
2017Orphanet Journal of Rare Diseases62 citations Open access
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The patient’s view on rare disease trial design – a qualitative study
C. M. W. Gaasterland, M. C. J. der Weide, M. J. du Prie-Olthof, M. Donk +9 more
2019Orphanet Journal of Rare Diseases50 citations Open access
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Long-Term Cognitive and Functional Outcomes in Children with Mucopolysaccharidosis (MPS)-IH (Hurler Syndrome) Treated with Hematopoietic Cell Transplantation.
A. Kunin-Batson, E. Shapiro, K. Rudser, C. Lavery +7 more
2016JIMD Reports34 citations Open access
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The diagnostic journey of patients with mucopolysaccharidosis I: A real-world survey of patient and physician experiences
S. Bruni, C. Lavery, A. Broomfield
2016Molecular Genetics and Metabolism Reports34 citations Open access
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Recommendations on clinical trial design for treatment of Mucopolysaccharidosis Type III
Arunabha Ghosh, E. Shapiro, S. Rust, Kathleen A. Delaney +9 more
2017Orphanet Journal of Rare Diseases30 citations Open access
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Evaluating a Psychoeducational, Therapeutic Group for Parents of Children with Autism Spectrum Disorder
Aisling McAleese, C. Lavery, K. Dyer
201425 citations
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The Burden Endured by Caregivers of Patients With Morquio A Syndrome Results From an International Patient-Reported Outcomes Survey
C. Hendriksz, C. Lavery, M. Çoker, S. K. Uçar +3 more
201414 citations Open access
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Psychosocial outcomes of bone marrow transplant for individuals affected by Mucopolysaccharidosis I Hurler Disease: patient social competency.
Cheryl Pitt, C. Lavery, Nadia Wager
2009Child: Care, Health and Development12 citations
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A three- to six-year follow-up of former long-stay residents of mental handicap hospitals in Northern Ireland.
M. Donnelly, S. McGilloway, N. Mays, Sarah Perry +1 more
1997British Journal of Clinical Psychology11 citations
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32. International patient survey demonstrates treatment satisfaction for mucopolysaccharidosis I
G. Cox, W. Harris, K. Harkins, B. Wedehase +2 more
20094 citations
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Mucopolysaccharidosis and Adulthood: Genetics, Inheritance, and Reproductive Options
Alison Wilson, C. Lavery, F. Stewart, Sophie Thomas +5 more
2018Journal of Child Science3 citations Open access
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Multi-stakeholder engagement leading to access to treatment for MPS IVA (Morquio syndrome type A), a model for the ultra rare disease community
C. Roberts, C. Lavery, N. Nicholls, Mohit J. Jain +3 more
20173 citations
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Role of patient support groups in lysosomal storage diseases
C. Lavery
20063 citations
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The Patient Perspective on Rare Diseases
A. Kent, C. Lavery, Jeremy Manuel
20122 citations
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Impact of elosulfase alfa treatment on patient-reported outcomes in Morquio syndrome type A: Results from the first year of a managed access agreement in England
C. Lavery, S. Jones, D. Hughes, E. Murphy +5 more
20181 citations
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258From testimonials to qualitative research embedded in an MPS IIIA observational study
S. Parker, S. Bekkali, A. Chakrapani, B. Héron +8 more
20171 citations
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Burden of disease suffered by patients with Morquio syndrome type A: results from a patient-reported outcomes survey
C. Hendriksz, C. Lavery, C. Lampe, L. Bell +1 more
20141 citations
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Patient-Reported Outcomes Survey The Burden Endured by Caregivers of Patients With Morquio A Syndrome : Results From an International
C. Hendriksz, C. Lavery, M. Çoker, S. K. Uçar +3 more
20141 citations
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On the receiving end of genetic medicine
C. Lavery
20200 citations
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Clinical outcomes in Morquio syndrome type A treated with elosulfase alfa: results from the managed access agreement in England
D. Hughes, M. Cleary, T. Geberhiwot, C. Hendriksz +5 more
20180 citations
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Patient organisations working in partnership to research the patient experience of rare diseases: The MPS III survey
A. Morrison, M. Weigl, Anna Prӓhofer, Carmen R. Kunkel +7 more
20180 citations
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A consensus conference for cognitive endpoints for clinical trials and natural history studies in MPS diseases
E. Shapiro, J. Greenberg, M. Dant, C. Lavery +4 more
20180 citations
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Collaborative working to advance standards of care and the well-being of lysosomal disorder patients and families in the UK
Tanya L. Collin-Histed, C. Lavery, T. Mathieson, Pat Roberts +3 more
20180 citations
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Pedigree analysis: A call to action to raise awareness of Fabry disease and the importance of family history evaluation
N. Karabul, A. Bradley, J. de Dios García Díaz, L. Figuera +8 more
20150 citations
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Raising awareness of lysosomal diseases amongst British medical students
C. Lavery, D. Fine, Emma Keohane, H. Grant +2 more
20150 citations
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Treatment decision making for parents of children with lysosomal disorders in the era of rapidly advancing medical options
Angela Simcox, Noelle Brackett, M. Cleary, L. Abulhoul +1 more
20150 citations
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Burden of disease suffered by caregivers of patients with Morquio syndrome type A: results from a self-reported outcomes survey
C. Lampe, C. Hendriksz, C. Lavery, L. Bell +1 more
20140 citations Open access
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Pedigree analysis in patients with Fabry disease: evaluating changes in referral and diagnosis over successive generations
C. Lavery, D. Hughes, U. Ramaswami, C. Hendriksz +1 more
20140 citations
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Supporting the patient and family with mucopolysaccharidosis disorders: the role of patient organizations
C. Lavery, U. Ramaswami
2007Acta paediatrica0 citations
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Know your organizations: the Society for Mucopolysaccharide Diseases.
C. Lavery
1983Health visitor0 citations
Semantic Scholar

L. Bell

×5

D. Hughes×4

M. Cleary×4

T. Geberhiwot×3

U. Ramaswami×3

M. Çoker×3

S. K. Uçar×3

E. Shapiro×3