- 2002: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Founded by a small group of pediatric rheumatologists who aimed to create an investigator-led collaborative research network by establishing a registry. The information is provided by the medical team and by patients and their families. The registry was created to monitor the long-term safety of the medications used to treat pediatric rheumatic diseases. https://carragroup.org pediatric registry is established. The founding members quickly realized that one of the best ways to achieve its primary focus was to begin a registry project. The CARRA Registry was later founded as a means to collect information about how childhood-onset rheumatic diseases are treated and how they affect patients by collecting information from the medical team, patients, and their families. United States
- 2006: The National Institute for Health Research (NIHR) (NIHR) was established in 2006 under the government’s health research strategy Best Research for Best Health to “create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public”. Since that time, we have transformed research in and for the NHS and helped to shape the health research landscape more broadly. Our mission is unchanged: to improve the health and wealth of the nation through research. We deliver against this mission through five core workstreams. www.nihr.ac.uk establishes the ‘Patient Research Ambassadors’ network and supporting GenerationRGenerationR is a National Network (GenerationR Alliance) of Young People’s Advisory Group’s (YPAGs) based across the United Kingdom to support the design and delivery of paediatric research. GenerationR Alliance YPAGs are a resource available to any health researcher (both academic and life science industries) who seek the input of children, young people, and families in their research projects www.invo.org.uk , a series of young people’s advisory groups across the country enabling children and young people under 25 to be involved in research. United Kingdom
CoPI: Advisory panels
Context: Research & Development, dissemination (knowledge translation), children, registries, young adults