In the US, the Rare Diseases Clinical Research Network (RDCRN) was created in 2003 which includes a registry for patients afflicted with a rare-disease.[78][79] This registry provides information to the patients and allows physicians to contact potential patients for enrollment in clinical trials.[79] "Patient registry" is a developing term, and this 2013 open-access book provides a comprehensive description of the trend toward registries and their networks, i.e. the "broader research collaboratives that connect individual registries".[80] Organizations such as the National Pediatric Cardiology Quality Improvement Collaborative have generated significant improvements in clinical outcomes through a commitment to co-creation of research.[81]