Evaluating the health burden of systemic vasculitis
Research type
Research Study
Full title
Evaluating the health burden of systemic vasculitis: A case validation and data enrichment study
IRAS ID
218677
Contact name
Shifa Sarica
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Anti-neutrophil cytoplasmic antibody associated vasculitis (AAV) represents a group of rare, multisystem autoimmune disorders. Immunosuppressive therapy has revolutionised the fatal nature of these diseases, and has improved patient prognosis. However, AAV patients still have to live with a considerable comorbidity burden which awaits to be quantified.
This study builds upon our ongoing data-linkage study (sponsor ref no: 2-038-15; A REC ref no: 15/SS/0152), and aims to further quantify and contextualise comorbidities in AAV. Our ongoing data-linkage study makes use of various routinely-collected NHS administrative healthcare databases to gather information on both the comorbidities in AAV and their potential risk factors. However, information on these are limited in administrative health records.
In an effort to validate and also enrich the data of our ongoing study, the current study proposes to retrospectively review the clinical records of a consented subset of patients with AAV. The objectives behind this are twofold: (i) to validate the diagnoses of comorbidities in the administrative healthcare databases, and (i) to collect data on important determinants of comorbidities in AAV which cannot be retrieved through NHS databases used in the initial data linkage study. Overall, we believe that validation of the diagnoses as well as the enrichment of the existing datasets of our ongoing study using clinical records will provide invaluable insight into the risk factors of comorbidities in AAV. Additionally, this will inform us on the usefulness of existing electronic databases in establishing both comorbidity diagnoses and risk factors in a specialised care population. This detailed insight would provide strong evidence for both furthering the understanding the occurrence of comorbidities in AAV and improving care for patients with AAV, as well as establishing the value of routinely-collected administrative healthcare data for research purposes in this highly specialised population.REC name
London - City & East Research Ethics Committee
REC reference
17/LO/0178
Date of REC Opinion
23 Jan 2017
REC opinion
Favourable Opinion