CC BY 4.0 DEED Attribution 4.0 InternationalKanguru, LovneyCudmore, SarahLogan, GemmaWaddell, BrionySmith, ColinMolesworth, AnnaKnight, Richard2024-01-042024-01-042024-01-032023-03-01Kanguru, L., Cudmore, S., Logan, G., Waddell, B., Smith, C., Molesworth, A. and Knight, R. (2024) ‘A review of the enhanced CJD surveillance feasibility study in the elderly in Scotland, UK’, BMC Geriatrics, 24(1), p. 12. Available at: https://doi.org/10.1186/s12877-023-04556-z.https://eresearch.qmu.ac.uk/handle/20.500.12289/13640https://doi.org/10.1186/s12877-023-04556-zFrom Springer Nature via Jisc Publications RouterHistory: received 2023-03-01, registration 2023-12-01, accepted 2023-12-01, epub 2024-01-03, online 2024-01-03, collection 2024-12Acknowledgements: Our sincere thanks and appreciation go to Tracy Millar and Chris Lerperniere for their help in coordinating authorisations of brain tissue donations and post-mortem investigations.Publication status: PublishedBackground: Variant Creutzfeldt - Jakob disease (vCJD) arose from dietary contamination with bovine-spongiform-encephalopathy (BSE). Because of concerns that vCJD-cases might be missed in the elderly, a feasibility study of enhanced CJD surveillance on the elderly was begun in 2016. Recruitment was lower than predicted. We describe a review of the challenges encountered in that study: identification, referral, and recruitment, and the effects of actions based on the results of that review. Methods: Review was conducted in 2017. Study data for all eligible cases identified and referred from one participating service (Anne Rowling clinic (ARC)) was curated and anonymised in a bespoke database. A questionnaire was sent out to all the clinicians in medicine of the elderly, psychiatry of old age and neurology (including ARC) specialties in NHS Lothian, exploring possible reasons for low recruitment. Results: Sixty-eight cases were referred from the ARC (March 2016-September 2017): 25% were recruited. Most cases had been referred because of diagnostic uncertainty. No difference was seen between those recruited and the non-recruited, apart from age and referrer. Twelve of 60 participating clinicians completed the questionnaire: only 4 had identified eligible cases. High workload, time constraints, forgetting to refer, unfamiliarity with the eligibility criteria, and the rarity of eligible cases, were some of the reasons given. Suggestions as to how to improve referral of eligible cases included: regular email reminders, feedback to referrers, improving awareness of the study, visible presence of the study team, and integration of the study with other research oriented services. These results were used to increase recruitment but without success. Conclusion: Recruitment was lower than predicted. Actions taken following a review at 21 months did not lead to significant improvement; recruitment remained low, with many families/patients declining to take part (75%). In assessing the failure to improve recruitment, two factors need to be considered. Firstly, the initial referral rate was expected to be higher because of existing patients already known to the clinical services, with later referrals being only newly presenting patients. Secondly, the unplanned absence of a dedicated study nurse. Searching digital records/anonymised derivatives to identify eligible patients could be explored.Licence for this article: http://creativecommons.org/licenses/by/4.0/This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.http://creativecommons.org/licenses/by/4.0/NeurologyPublic HealthScotlandVCJDElderlyHealth ProtectionCreutzfeldt-Jakob DiseaseSurveillancePrion DiseaseSCJDarticle2024-01-04