The Dutch Dyslexia ProgrammeA case study
Open data access week RuG 26-10-2012
Natasha M. MauritsProfessor of clinical neuroengineering
Chair of the DDP steering group
University Medical Center Groningenwww.clinicalneuroengineering.com
Amsterdam – Groningen - NijmegenOpen data access week RuG 26-10-2012
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
How much data are we talking about?
Open data access week RuG 26-10-2012
How much data are we talking about?
Open data access week RuG 26-10-2012
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)
Implementation1) 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
Coupling to raw data through manual
Open data access week RuG 26-10-2012
Status
• Checking manual vs metadata file
• Privacy sensitivity issues (eg video data)
• Ready in 2013?
Open data access week RuG 26-10-2012