Table 1.
CEGIR: Contributions to the Field, and Lessons Learned
Benefit | Comment |
---|---|
Funding | $1.25 million of annual funding is provided by the NIH |
Collaborations | Enhanced collaboration among investigators and patient advocacy groups |
Leverages other funding mechanisms | Cofunding provided by select institutions and PAGs |
Unifies different stakeholders within the field | Brings together pediatric and adult gastroenterologists, allergists, pathologists, basic science investigators, NIH Institute Centers, and PAGs |
Interaction with other consortia in network | Sharing of research platforms across sites |
Data management and coordination | RDCRN provides this service as part of the participation The DMCC allows CEGIR to leverage a number of services not normally available to stand-alone grants |
Support for trainees | Trainees benefit from participating in CEGIR clinical studies, can use CEGIR generated research resources and can participate in RDCRN wide training programs |
Provides infrastructure upon which other studies are built | Registries provide resource for other studies |
Partnership and Engagement of Expertise of NIH | The U54 grant mechanism is a cooperative agreement and benefits from interaction with NIH experts including Medical Officer, Project Scientist, Program Officers, DSMB, and others |
Develops uniform processes and consensus opinions and approaches | Examples include central pathology review, standard operating manual for common procedures such as skin testing |
CEGIR, Consortium of Gastrointestinal Eosinophilic Disease Researchers; DMCC, Data Monitoring Coordinating Center; DSMB, Data Safety Monitoring Board; NIH, National Institutes of Health; PAG, patient advocacy groups; RDCRN, Rare Disease Clinical Research Network.