Project Update September 2017

1)      GENERAL

Final draft of the SOP for MLSE testing has been finalised and circulated to the group. NP to meet KP and KPE at Cambridge to finalise the MLSE scoring SOP. An SOP for REDCap data entry will also be drafted by NP.

2)      PARTICIPANT RECRUITMENT AND TESTING

Current recruitment status:

SGUL: 4 participants booked in for the coming weeks (2 controls and 2 patients [1 PNFA, 1 SD]).

Cambridge: 4 participants booked in for the coming weeks (4 patients [3x PSP, 1 SD).

Manchester: Approximately 8 patients (part of Ruth Ingram’s project- 2-3 SD, 2-3 PNFA and 1-2 LPA).

SGUL has been contacted by Wessex CRN (Southampton, Poole and Portsmouth University Hospitals) and Thames Valley via the Central Portfolio Management System (CPMS) to contribute as recruitment sites for the MLSE study. SGUL still awaits confirmation from research managers from both groups after discussions with their local PI’s.

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 has been in contact with EC to action the REDCap database (or equivalent) for the Italian group.

NP is finalising the online data storage structure on REDCap for the MLSE/BDAE/ACE-III tests. Access to Cambridge and Manchester will be granted soon for feedback and data entry.

SGUL are working towards setting up XNAT in SGUL to facilitate sharing of imaging data with Cambridge and Manchester. This is currently with the SGUL IT and IG team. TB and NP to follow progress.

4)      PROJECT IMPACTS

PG was invited to write a blog for the NIHR’s FTD awareness week. Please follow the link below to access the webpage:

‘Unpicking’ Pick’s disease: working towards accurate diagnosis of frontotemporal dementia

The MLSE study now has a Twitter account so please follow/tweet relevant to the project @MLSE_Study.

5)      DATE OF NEXT PROJECT MEETING

The next face-to-face meeting is provisionally scheduled for Sunday January 21st January 2018, in Bressanone, Italy (to coincide with the European Workshop on Cognitive Neuropsychology, which runs from January 22nd – 26th). SC and PG to finalise exact timing and venue of Bressanone meeting.

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