1) PARTICIPANT RECRUITMENT AND TESTING
25 participants have been tested so far across the three study sites (9x controls; 16x patients).
Breakdown of group Ns across centres:
SGUL: 14 participants (8 controls, 3 PNFA, 2 CBS, 1 PSP)
Cambridge: 11 participants (1 control, 1 PNFA, 1 CBS, 5 PSP, 2 SD, 1 LPA)
15 participants scheduled for January (so far):
SGUL: 5 Controls, 1 PNFA, 2 LPA
Cambridge: 1 control, 1 CBS, 2 PSP, 2 LPA
Manchester have identified 10 patients (6 PNFA, 2 SD, 2 LPA). 1 patient scheduled in for January 2018.
Manchester Group have also created a list of approximately 22 patients with post-stroke aphasia- which Blanca will start to see in the New Year.
2) ADDITIONAL RECRUITMENT SOURCES
We have received expressions of interest from patients via the Join Dementia Research (JDR) database to take part in the MLSE study. The study does not currently have ethical approval to recruit patients via JDR, but NP has submitted a substantial amendment to recruit patients via JDR.
SGUL has been contacted by Wessex (Southampton, Poole and Portsmouth University Hospitals), Thames Valley CRNs and South London and the Maudsley (SLaM) Trust – all via the Central Portfolio Management System (CPMS) – with expressions of interest in contributing to study recruitment.
SGUL has accepted the interest from Thames Valley (Chris Butler’s group in Oxford), which will be added as a PIC site for the study, with Chris’s team helping to recruit PPA patients for testing and scanning in London.
The approach from SLaM is currently being followed up. NP is processing a substantial amendment for addition of PIC sites for this study.
3) DATA SHARING
SGUL has received the signed data sharing agreement for the REDCap database from the Cambridge Governance office. We still await confirmation of agreement from the Manchester group.
NP and KPE have completed the online data storage structure on REDCap for the BDAE/ACE-III tests with an automated scoring system. The MLSE scoring system will be discussed and finalised early/mid next year.
SGUL has successfully set up XNAT at SGUL to facilitate sharing of imaging data with Cambridge and Manchester. User access for Cambridge and Manchester to follow in the New Year.
4) DATE OF NEXT PROJECT MEETING
The next face-to-face meeting will take place at the Accademia Cusano on Monday 22nd January 2018, in Bressanone, Italy (to coincide with the European Workshop on Cognitive Neuropsychology, which runs from January 22nd – 26th). A room has been booked in the Accademia between 09:00 and 15:00.