2 research outputs found
Impact of the COVIDâ19 pandemic on CreutzfeldtâJakob disease surveillance and patient care in the United Kingdom
BACKGROUND AND PURPOSE: CreutzfeldtâJakob disease (CJD) is lethal and transmissible. We assessed the impact of the COVIDâ19 pandemic on UK CJD surveillance. We hypothesized that (i) disruptions prolonged diagnostic latency; (ii) autopsy rates declined; and (iii) COVIDâ19 infection negatively affected diagnosis, care, and survival. METHODS: We retrospectively investigated the first year of the pandemic, using the preceding year as a comparator, quantifying numbers of individuals assessed by the UK National CJD Research & Surveillance Unit for suspected CJD, time to diagnosis, disease duration, and autopsy rates. We evaluated the impact of COVIDâ19 status on diagnosis, care, and survival in CJD. RESULTS: A total of 148 individuals were diagnosed with CJD in the pandemic (from a total of 166 individuals assessed) compared to 141 in the comparator (from 145 assessed). No differences were identified in disease duration or time to diagnosis. Autopsy rates were unchanged. Twenty individuals had COVIDâ19; 60% were symptomatic, and 10% had severe disease. Disruptions in diagnosis and care were frequently identified. Forty percent of COVIDâ19âpositive individuals died; however, COVIDâ19 status did not significantly alter survival duration in CJD. CONCLUSIONS: The COVIDâ19 pandemic has not impacted UK CJD case ascertainment or survival, but diagnostic evaluation and clinical care of individuals have been affected
Obstacles to conducting epidemiological research in the UK general population
Experiences from a national case-control study of Creutzfeldt-Jakob disease show the tensions between protecting individual patients' confidentiality and the access required for the benefit of public healt