1. The Dutch Dyslexia Programme A case study Open data access week RuG 26-10-2012 Natasha M. Maurits Professor of clinical neuroengineering Chair of the DDP steering group University Medical Center Groningen www.clinicalneuroengineering.com n.m.maurits@umcg.nl www.clinicalneuroengineering.com

2. Amsterdam – Groningen - Nijmegen Open data access week RuG 26-10-2012

3. Core features of the DDP longitudinal project 180 at-risk and 120 control children brain measures (EEG): 8 moments from 2 - 41 months behaviour and developmental measures: 17 months – 6 years reading – spelling - calculating: group 2 – 5 influence environment: at home and school intervention project early: group 2 and 3 (5 and 6 years) – and group 4 genetic project sib-pairs from 108 (independent) families → traits DNA from parents and children from the longitudinal project Open data access week RuG 26-10-2012

4. How much data are we talking about? Open data access week RuG 26-10-2012

5. How much data are we talking about? Open data access week RuG 26-10-2012

6. DDP and Open Access Goal to provide future data access to DDP group and other interested researchers Means DANS – Data Archiving and Networked Services (KNAW and NWO) data storage and access for ‘alpha’ and ‘gamma’ sciences self archiving (metadata and raw data files) Implementation 1)Other acces (data deposited under embargo for three years) 2)Restricted access (steering group decides who gets access) 3)Open access in future? Open data access week RuG 26-10-2012

7. Coupling to raw data through manual Open data access week RuG 26-10-2012

8. Status Checking manual vs metadata file Privacy sensitivity issues (eg video data) Ready in 2013? Open data access week RuG 26-10-2012