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

n.m.maurits@umcg.nl

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