The consortium is composed of scientists and clinicians from around the world striving to make major discoveries that will make a significant difference to the lives of affected individuals.
The consortium benefits from a shared database using standardized collection tools. Investigators can submit their data and access data collected by other investigators or contributors. Investigators can initiate research projects from both existing and new data collected within the consortium. All of these activities occur in a highly collaborative manner to accelerate research and promote data sharing and to also preserve the progress made by individual investigators and prior collaborative arrangements.
By bringing our collective knowledge and background to bear on understanding these disorders, we can immediately pool information on at least 500 cases across a variety of different syndromes as well as isolated callosal dysgenesis. Building upon this foundation, we will increase our cohorts over the coming years to include thousands of subjects enrolled through consortium participants, independent clinicians, and self-referral, and thoroughly screened by the brain morphology working group. This approach greatly increases the number of people we can involve in the research, while maintaining consistency and excellence of case selection.