Virtual MINDDS Workshop 3
A data sharing platform for NDD
4 pm (CEST; 3 pm UK) September 28th

Speakers Joris Vermeesch & Benjamin Huremajic
Department of Human Genetics and Amin Ardeshirdavani, PhD
Faculty of Engineering – ESAT/STADIUS
Bio-I Group
KU Leuven

MINDDS-connect is a prototype sharing platform for data and biomaterials for research of rare variant, especially CNV, associated neurodevelopmental disorders (NDD) under development by the MINDDS network. It aims to streamline research collaboration between geographically dispersed research groups studying NDD-associated with rare genetic variants.

Patient attitudes to the collection of data and biosamples differ in different cultural backgrounds. This can be particularly significant for collection of blood, especially if its subsequent usage includes the generation of iPSC. In this workshop, we discuss the experiences of the NeuroDev study, which is investigating neurodevelopmental disorders in sub-Saharan Africa through large-scale sample collection, analysis and participant follow-up.

The use of patient induced pluripotent stem cells (iPSC) heralds the emergence of new technologies that present opportunities from studying the biological mechanisms at the origins of metal health to development of new therapies, diagnostics and precision medicine.

These approaches closely interface with the needs of the individual patient and hence it is essential to work within an appropriate ethical framework. MINDDS has conducted a review of iPSC activity for the study of neurodevelopmental disorders (NDD).

This workshop aims to propose and discuss a MINDDS code of ethics for iPSC-based studies.