NCT02629640

Enhanced CJD Surveillance in the Older Population

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 30 (actual)
• Sponsor: University of Edinburgh · Academic / Other
• Sex: All
• Age: 65 Years
• Healthy volunteers: Not accepted

Summary

The purpose of this study to investigate if cases of Creutzfeldt-Jakob Disease (CJD) and other forms of prion disease are being missed in older adults living within Lothian.

Detailed description

The study involves patients aged 65 years or over who have been seen by a neurologist or psycho-geriatrician and identified as having features that are atypical for the known types of dementia. All patients will be invited to an initial meeting with the research team to discuss the study and, if they agree to participate, for clinical assessment and epidemiological review. Participants will be asked to donate blood or a buccal sample for codon-129 polymorphism genotyping and may be offered a MRI brain scan if no such imaging has been previously undertaken. Participants will also be asked to consider if, in the event of their death, they would donate samples of brain tissue to the Edinburgh Brain Bank for use in this and future research. Telephone follow up will be offered within 1 month of joining the study and at 3 monthly intervals thereafter, with further clinical review offered if deemed appropriate.

Conditions

• Prion Disease
• Dementia

Interventions

Type	Name	Description
OTHER	Medical history questionnaire	Epidemiological review of past medical/dental history; residential history; occupational history; family history of neurodegenerative disease.
OTHER	Clinical assessment and review	History of current illness; neurological examination including general appearance, full cognitive assessment and physical examination; MRI research brain scan.
OTHER	Participant follow-up	Hospital patient management system; regular telephone contact with patient/representative.
OTHER	Blood or buccal sample	Codon-129 genotyping; storage for future research.
OTHER	Post mortem examination	Brain tissue donation to the Edinburgh Brain and Tissue Bank for research,including investigations for evidence of prion disease.

Timeline

• Start date: 2016-01-19
• Primary completion: 2022-03-31
• Completion: 2022-03-31
• First posted: 2015-12-14
• Last updated: 2024-06-10

Locations

1 site across 1 country: United Kingdom