Duration: 07 November 2017 – 6 November 2021
Website: COST Action
- Design and develop of an approach for transnational patient recruitment, incorporating regulatory, legal and ethical requirements. These will include protocols for new clinical assessment, patient registration and data deposition.
- Standardization of protocols and methodologies to maximize the utility and quality of the resultant research data outputs. Standardized research protocols will encompass the major study regimes, including clinical phenotyping, brain imaging and patient-derived cell studies.
- Delivery of data integration and sharing via linkage to relevant data platforms, supporting informatics protocols to enhance NDD patient research.
- Place the study of rare NDD patients in the context of other neuroscience research by promoting a Convergent Neuroscience approach.
- An education programme for enhanced training and knowledge exchange including research conferences, training schools and workshops.
- Creation of standardized protocols, experimental methodologies and best practice for NDD research.
- Knowledge exchange via its “Knowledge Nexus” to collate and share our expanding knowledge with researchers, clinicians and patients.
Coordinator: Department of Paediatrics and Child Health, University of Cape Town