Clinical Trial: Enhanced CJD Surveillance in the Older Population

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational

Official Title: Enhanced CJD Surveillance in the Older Population

Brief 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 Summary: 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 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.
Sponsor: University of Edinburgh

Current Primary Outcome: Evidence of prion disease pathology in the Lothian population, a description of the associated clinical/pathological and epidemiological features and referral characteristics, and how this compares with other cases of prion disease. [ Time Frame: 2.5 years ]

Original Primary Outcome: Same as current

Current Secondary Outcome:

  • Description of clinical, pathological and epidemiological characteristics of patients with atypical features of dementia in the Lothian population. [ Time Frame: 2.5 years ]
  • Assessment of the suitability of methods to support an extended system of enhanced CJD surveillance in the rest of the UK. [ Time Frame: 2.5 years ]


Original Secondary Outcome: Same as current

Information By: University of Edinburgh

Dates:
Date Received: December 10, 2015
Date Started: January 2016
Date Completion: March 2018
Last Updated: May 16, 2017
Last Verified: May 2017