Before the practical work on patient cases has started using the CPMS interface the main focus of the WG has been to collect relevant information on the current pathology practices among the participating HCPs, since it is well known that no uniform protocols are used for assessment of muscle, nerve and skin biopsies. A questionnaire to collect relevant data was sent to all HCPs in April 2017 but the response activity was slow and now almost 1 year later after several reminders 8 HCPs still remain without any response at all. The questionnaire is also part of GAP analysis.
Despite the slow feedback the WG has started to analyse the responses and to work on recommendations for harmonizing neuromuscular pathology methodological practices. A second part of the ongoing work is to provide recommendations on reporting pathology findings in order to create systemic platforms that are compatible with incorporation of the data in analyses using also clinical and genetic data. For this purpose the WG has also collected examples of current pathology reports from the responders.
The WG is currently working on drafts for these recommendations and when formulated these will be sent out to the larger interest group (see above) for comments and in the final round the WG will have a face-to-face meeting towards the end on 2018 to finalize the recommendations.
The analyses of the responses and the non-responders also reveal current gaps and the need for training in neuromuscular pathology by interacting with CPMS the WG has established basic competence for direct consultations of cases for exchange of clinical data and pathology images.
|Werner Stenzel||Charité – Universitätsmedizin Berlin, Department of Neuropathology|
|Norma Romero||Institut de Myologie, APHP Hopital de Salpetriere, Paris|
|Montse Olive||Bellvitge Biomedical Research Institute, Hospital Universitari Vall D’Hebron|
|Massimo Mara||Patient Representative|
|Teresinha Evangelista||Institut de Myologie, APHP Hopital de Salpetriere, Paris|