1. WP6: Data acquisition and processing for NND WP Leader: VUmc Amsterdam Amsterdam – 23-24 February 2015

2. Status of Data Collection NND VUMC Patient Reference Complete AcquiredGOAL TOTAL OVERALL950 Total CP prospective extended(1)10 Total CP prospective clinical540 Total TD reference data420 Amsterdam – 23-24 February 2015 NND KUL Patient Reference Complete AcquiredGOAL TOTAL OVERALL112490 Total CP prospective extended010 Total CP prospective clinical240 Total CP retrospective110400 Total DMD T0010 Total DMD T1010 Total CMT T0010 Total CMT T1010 NND OPBG Patient Reference Complete AcquiredGOAL TOTAL OVERALL71 Total CP prospective extended610 Total CP prospective clinical940 Total CP retrospective39200 Total DMD T0810 Total DMD T1010 Total CMT T0910 Total CMT T1010 Healthy MRI22100

3. Status of Data Integration Amsterdam – 23-24 February 2015

4. Status of data integration Status Data shared on Gnubila folders (not yet repository) Complete lists of standard outcome parameters developed New standard gait data format (.mox) developed Issues Few (minor) issues to solve for standard outcomes + mox DPS needs to be finalized Not clear how to process data to correct format Amsterdam – 23-24 February 2015

5. Status of Data Usage (in TQA + WP11) Status: Healthy gait (TQA) data used by URLS + Motek + TUD Healthy MRI data used by Siemens CP MRI data OPBG used by Siemens? Issues: Differences in data processing (models used) and storage Usability of hip and knee functional calibration trials Combining MRI stacks? Amsterdam – 23-24 February 2015

6. Outcome compared with former self-assessment criteria Based on self-assessment August 2013 Amsterdam – 23-24 February 2015 MinMaxStatus Number of … 6.2 -1 extended data sets M18 10157 6.2 -2 prospective datasets M18 357516 6.2 -3 retrospective datasets M36 300150149 6.3 -1DMD data sets available M18 15208 6.3 -2CMT data sets available M1815209 6.4 -1 image acquisition M18 101524 6.4 -2 MRI data from healthy children M12 103022 6.4 -3 DXA data from healthy children M12 1520n.a.

7. Outcome compared with updated self-assessment criteria New self-assessment Amsterdam – 23-24 February 2015 StatusM24 M36 M48 min/max min/max goal Number of … 6.2 -1 extended data sets 73/10 20/30 30 6.2 -2 prospective datasets 1615/20 100/150 120 6.2 -3 retrospective datasets 149100/150 300/600 600 6.3 -1 DMD data sets available 88/10 20/30 40 6.3 -2CMT data sets available 99/10 20/30 40 6.4 -1 Image acquisition CP+DMD+CMT243/10 50/70 70 6.4 -2 MRI data from healthy children 2220/25 50/100 100

8. Submitted/Forthcoming deliverables D6.1: ‘CGA standard protocol’ submitted in time (August 2014) D6.2: ‘Standard minimal data set’ first complete version ready to be submitted Feb 28 Not all (extended) data sets complete! D6.3: ‘Collection of CP patients clinical gait dataset’ [M36] reprocessed from existing databases (600) new measurements (minimum of 30 per center) Amsterdam – 23-24 February 2015

9. Next steps Further check usability of data by modellers Finalize data upload to repository Collect data! Amsterdam – 23-24 February 2015

10. What we are going to present to the EC (Annual review) Significant results – Status of data collection – Standardization of data formats (outcome parameters, mox format etc) Use cases: show entire pipeline for 3 centers – Data collection + modelling of TD subjects (TQA) Gait data OPBG + KUL + VUMC MRI data OPBG Used to create subject-specific models by WP11 Amsterdam – 23-24 February 2015

11. Current open issues Issues/criticalities Data acquisition numbers and patient recruitment Storage of data in folder + repository – patient numbering, data formats, processing of gait data (model used), naming of parameters,... Data quality for modellers? Corrective actions See new self-assessment plan Amsterdam – 23-24 February 2015

12. VUmc data collection Several issues encountered – Late delivery of new lab; prospective data only on GRAIL – Ethical approval amendment to include more patient categories – Technical issues with data collection (marker tracking!) – No (good) local database available Amsterdam – 23-24 February 2015

13. VUmc data collection Significant results – Complete extended protocol (incl MRI) tested on healthy adult + healthy child – First extended protocol (MRI + gait) performed on CP patient E-01 (other tests planned) – 5 prospective clinical patient pre-treatment collected – Local database designed (based on MDP protocol) and under development Amsterdam – 23-24 February 2015

14. NND – Vumc – CP – E - 01 Amsterdam – 23-24 February 2015