MINDDS will create a pan-European network of clinical scientists, preclinical researchers from both public and industrial sector and patient groups to advance studies of NDD patients arising from pathogenic CNV. The project aims to substantially accelerate research progress for NDD by three interlinked objectives.
First, the initiative will create an international network for building larger patient cohorts, who are willing to participate in research. To do this, it will agree a gold standard clinical patient assessment to ensure that all key relevant data is collected in the same way and that patients can easily be compared from different national sites. Furthermore, MINDDS will establish a regulatory, legal and ethical framework for effective trans-national NDD patient research cooperation and information exchange.
Second, to ensure maximum value is realized from patient-based research, MINDDS will develop standardized protocols and methods so that the same research methods are made regardless of which research centre is used. This standardization of protocols will include whole patient studies, such as cognitive testing and brain imaging, but also new and emerging technologies of patient-derived stem cells.
Lastly, MINDDS will develop an overarching online resource for sharing information – a knowledge nexus. This will include a European registry for NDD patients, who may participate in future research; a research database for active researchers and an information service for clinicians, patients, care providers and parents.
MINDDS aims to bring together a community via conferences, workshops and working groups. It will train clinicians to identify and assess NDD patients with CNV, who are often children, and offer a way for them to work together to build the research cohorts.
If you wish to join MINDDS, please contact Prof Adrian J Harwood on firstname.lastname@example.org.
Link to blog: Here