1) GENERAL
The project has received local R&D approval at the both Cambridge and SGUL sites.
This study has now been successfully added to the Clinical Research Network South London Portfolio.
A Project face-to-face meeting was held at SGUL on Tuesday 18th July 2017.
2) PARTICIPANT RECRUITMENT AND TESTING
Copies of the BDAE have been delivered to SGUL and Cambridge. Members of SGUL, Cambridge and Manchester have agreed to discuss the elements of BDAE to be included for testing via teleconference (to be scheduled by Nikil Patel [NP]).
Complete data on the full set of items from the pre-norming stimuli from 30 controls (UK) and 112 (Italy) was discussed at the recent face-to face meeting at SGUL. Changes to the MLSE are to be implemented by NP and an updated MLSE (v.3) will be available on Dropbox.
The aim for patient testing to start in August should be noted after finalising the discussions of validation items from BDAE. The team can hope to compensate for the time delay towards the end of 2017 once recruitment has commenced.
SGUL and Cambridge have both completed registration with Join Dementia Research (JDR) database for recruitment of healthy controls and patients.
3) DATA SHARING
Nikil and Peter discussed the REDCap proposal with SGUL’s Information Governance consultant and the SGUL Solicitor, and there is general agreement that, subject to a data sharing agreement being signed off by all collaborating centres, non-identifiable test data from patients and controls can be stored and shared using this web based solution.
SGUL has received the signed data sharing agreement from the Cambridge Governance office. We await confirmation of agreement from the Manchester group. We require confirmation from the Italian group of institutional access to REDCap database to process a data sharing agreement with them.
SGUL have been granted credentials for REDCap login and NP has started constructing the online data storage structure for the MLSE/BDAE/ACE-III tests.
PG and TB spoke to Clare Mackay about SGUL being included as a hub in the DPUK imaging platform. This was accepted in principle, and we will begin to work towards setting up XNAT in SGUL to facilitate sharing of imaging data with Cambridge and Manchester.
4) PROJECT IMPACTS
The project website theme has been updated. Please visit the website when you can; feedback/suggestions are welcome. This project update will have been archived in the Updates page.
Katie now has access to admin details and can add any updates that the Cambridge group wish to make. If Matt and/or Stefano think it would be useful to have someone with admin rights in Manchester and/or Pavia, please could they let Nikil and Peter know.
A paper on the control data from the Italian version of the pilot materials has been accepted for publication in Neurological Sciences. The paper or a link to it (depending on open access policy) will be posted on the website when production is complete. The paper can now be accessed via Dropbox.
5) DATE OF NEXT PROJECT MEETING
A project teleconference will be scheduled in October/November 2017 [exact date and time to be confirmed via a Doodle poll [NP to action]. The next face-to-face meeting will be held in January 2018, in Bressanone, Italy (to coincide with the European Workshop on Cognitive Neuropsychology, which runs from January 22nd-26th). Exact date and time of MLSE meeting to be decided.