WP6: Data acquisition and processing for NNDWP Leader: VUmc Amsterdam

Amsterdam – 23-24 February 2015

Status of Data Collection

NND VUMC

Patient ReferenceComplete Acquired GOAL

TOTAL OVERALL 9 50Total CP prospective extended (1) 10Total CP prospective clinical 5 40Total TD reference data 4 20

Amsterdam – 23-24 February 2015

NND KUL

Patient ReferenceComplete Acquired GOAL

TOTAL OVERALL 112 490Total CP prospective extended 0 10Total CP prospective clinical 2 40Total CP retrospective 110 400Total DMD T0 0 10Total DMD T1 0 10Total CMT T0 0 10Total CMT T1 0 10

NND OPBG

Patient ReferenceComplete Acquired GOAL

TOTAL OVERALL 71Total CP prospective extended 6 10Total CP prospective clinical 9 40Total CP retrospective 39 200Total DMD T0 8 10Total DMD T1 0 10Total CMT T0 9 10Total CMT T1 0 10Healthy MRI 22 100

Amsterdam – 23-24 February 2015

Status of Data Integration

Amsterdam – 23-24 February 2015

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

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

Outcome compared with former self-assessment criteria

Based on self-assessment August 2013

Min Max StatusNumber of …6.2 -1 extended data sets M18 10 15 76.2 -2 prospective datasets M18 35 75 166.2 -3 retrospective datasets M36 300 150 149

6.3 -1 DMD data sets available M18 15 20 86.3 -2 CMT data sets available M18 15 20 9

6.4 -1 image acquisition M18 10 15 246.4 -2 MRI data from healthy children M12 10 30 226.4 -3 DXA data from healthy children M12 15 20 n.a.

Amsterdam – 23-24 February 2015

Outcome compared with updated self-assessment criteria

New self-assessment

Status M24 M36 M48min/max min/max goal

Number of …6.2 -1 extended data sets 7 3/10 20/30 306.2 -2 prospective datasets 16 15/20 100/150 1206.2 -3 retrospective datasets 149 100/150 300/600 600

6.3 -1 DMD data sets available 8 8/10 20/30 406.3 -2 CMT data sets available 9 9/10 20/30 40

6.4 -1 Image acquisition CP+DMD+CMT 24 3/10 50/70 706.4 -2 MRI data from healthy children 22 20/25 50/100 100

Amsterdam – 23-24 February 2015

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

Next steps

• Further check usability of data by modellers• Finalize data upload to repository• Collect data!

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

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

Amsterdam – 23-24 February 2015

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

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

NND – Vumc – CP – E - 01