• Login
    View Item 
    •   Home
    • University Hospitals of Leicester NHS Trust
    • Women’s and Children’s Services
    • Genetics
    • View Item
    •   Home
    • University Hospitals of Leicester NHS Trust
    • Women’s and Children’s Services
    • Genetics
    • View Item
    JavaScript is disabled for your browser. Some features of this site may not work without it.

    Browse

    All of EMERCommunitiesPublication DateAuthorsTitlesSubjectsThis CollectionPublication DateAuthorsTitlesSubjectsProfilesView

    My Account

    LoginRegister

    Links

    About EMERPoliciesDerbyshire Community Health Services NHS Foundation TrustLeicester Partnership TrustNHS Nottingham and Nottinghamshire CCGNottinghamshire Healthcare NHS Foundation TrustNottingham University Hospitals NHS TrustSherwood Forest Hospitals NHS Foundation TrustUniversity Hospitals of Derby and Burton NHS Foundation TrustUniversity Hospitals Of Leicester NHS TrustOther Resources

    Statistics

    Most Popular ItemsStatistics by CountryMost Popular Authors

    Evaluation of tumour surveillance protocols and outcomes in von Hippel-Lindau disease in a national health service

    • CSV
    • RefMan
    • EndNote
    • BibTex
    • RefWorks
    Author
    Barwell, Julian
    Harrison, Rachel
    Keyword
    von Hippel-Lindau disease
    tumour surveillance protocols
    national audit
    Date
    2022
    
    Metadata
    Show full item record
    Publisher's URL
    https://www.nature.com/articles/s41416-022-01724-7
    Abstract
    Background: Von Hippel-Lindau (VHL) disease is an inherited tumour predisposition syndrome and a paradigm for the importance of early diagnosis and surveillance. However, there is limited information on the "real world" management of VHL disease. Methods: A national audit of VHL disease in the United Kingdom. Results: VHL disease was managed mostly via specialist clinics coordinated through regional clinical genetics services (but frequently involving additional specialties). Over the study period, 19 genetic centres saw 842 individuals (393 males, 449 females) with a clinical and/or molecular diagnosis of VHL disease and 74 individuals (35 male, 39 female) with a prior risk of 50% (affected parent). All centres offered retinal, central nervous system and abdominal surveillance to affected individuals and at-risk relatives though surveillance details differed between centres (but complied with international recommendations). Renal lesions detected on the first surveillance scan were, on average, larger than those detected during subsequent scans and the larger the diameter at detection the greater the likelihood of early intervention. Conclusions: In a state-funded health care system individuals with a rare inherited cancer predisposition syndrome are generally able to access appropriate surveillance and patient management is improved compared to historical data. The "real world" data from this study will inform the future development of VHL management protocols.
    Citation
    Maher, E. R., Adlard, J., Barwell, J., Brady, A. F., Brennan, P., Cook, J., Crawford, G. S., Dabir, T., Davidson, R., Dyer, R., Harrison, R., Forde, C., Halliday, D., Hanson, H., Hay, E., Higgs, J., Jones, M., Lalloo, F., Miedzybrodzka, Z., Ong, K. R., … Sandford, R. N. (2022). Evaluation of tumour surveillance protocols and outcomes in von Hippel-Lindau disease in a national health service. British journal of cancer, 1–7. Advance online publication. https://doi.org/10.1038/s41416-022-01724-7
    Type
    Article
    URI
    http://hdl.handle.net/20.500.12904/15257
    Collections
    Genetics

    entitlement

     
    DSpace software (copyright © 2002 - 2023)  DuraSpace
    Quick Guide | Contact Us
    Open Repository is a service operated by 
    Atmire NV
     

    Export search results

    The export option will allow you to export the current search results of the entered query to a file. Different formats are available for download. To export the items, click on the button corresponding with the preferred download format.

    By default, clicking on the export buttons will result in a download of the allowed maximum amount of items.

    To select a subset of the search results, click "Selective Export" button and make a selection of the items you want to export. The amount of items that can be exported at once is similarly restricted as the full export.

    After making a selection, click one of the export format buttons. The amount of items that will be exported is indicated in the bubble next to export format.