Advancing our understanding of Pediatric IBD to improve patient quality of care and health outcomes.
Quality, pediatric-specific data is either limited or non-existent for virtually all therapeutic modalities employed for children with IBD. CCFA addresses this information gap through its Pediatric Resource Organization for Kids with Inflammatory Intestinal Diseases (PRO-KIIDS), aka the Pediatric Network, a large-scale, multi-center research collaborative conducting a variety of critical studies that promise to improve quality of care and lead to better health outcomes in pediatric IBD patients.
The dearth of pediatric-specific IBD data means that clinical practice in pediatric IBD is largely driven by knowledge generated in adult patients. Thus, there is a critical need for large-scale, targeted studies that will address this knowledge gap and lead to greater understanding of the unique factors involved in IBD onset and progression in children. This is particularly true for about 15% of pediatric IBD patients, whose disease is severe. These young patients experience growth failure, impaired quality of life, continued active gastrointestinal symptoms, and the eventual development of disease complications requiring surgery. It is critically important, therefore, to define at time of diagnosis those children most likely to require aggressive medical therapy to mitigate or avoid these negative outcomes.
For many years, CCFA regularly convened the foremost pediatric IBD basic and clinical researchers to identify priorities in pediatric science and advance pediatric IBD treatment and research. Already a leader in sponsoring programs and research focused on youth and infants, in 2008 CCFA created PRO-KIIDS, an umbrella network that further expands its portfolio of IBD research to advance pediatric research, and improve pediatric IBD quality of care.
KT Park, MD, MS
Stanford Children's IBD Center
Boston Children's Hospital
S. Alandra Weaver, MPH
Crohn’s & Colitis Foundation of America
Current Activities and Objectives
The Pediatric IBD Research Network is now extending a request for applications for centers in North America that are interested in joining our network. Eligibility is based on qualifications as detailed on the application form and final decisions will be made by the selection committee composed of members of the Pediatric Network and CCFA.
For a list of current membership sites, please visit the CCFA Clinical Trials Page.
For more information please contact:
Alandra Weaver, MPH
773 Third Avenue, Suite 510
New York, NY 10017
firstname.lastname@example.org • 646-943-7454
RISK: The Pediatric RISK Stratification Study (RISK).
RISK is designed to identify the genetic, microbiological, and immunological factors in children that are predictive of more severe IBD. 1, 100 patients at 28 centers in the United States and Canada have been recruited and enrolled at disease onset, and are being prospectively followed for complications and response to therapies. RISK findings will translate into new protocols for individualized approaches to treating Crohn’s disease and ulcerative colitis in children, aged 10 and under, and enable physicians to predict and prevent progression to severe disease and its lifelong consequences. Learn more about the Pediatric RISK Stratification Study.
PROTECT: Predicting Response to Standardized Pediatric Colitis Therapy (PROTECT)
Building on the success of RISK, PRO-KIIDS pediatric IBD study centers are also collaborating on the PROTECT study, a multi-center prospective cohort study of standardized medical therapy (mesalamine or corticosteroids) in newly diagnosed ulcerative colitis in children and adolescents. Researchers will follow patients for two years, collecting data that will prove invaluable for the study of IBD. The primary clinical goal of PROTECT is remission for one year without the use of steroid medications or the need for more potent immunosuppressive medications or surgery. Learn more about PROTECT.
NEOPICS: The interNational Early Onset Paediatric IBD Cohort Study
NEOPICS is a SickKids’ based initiative that convenes international pediatric gastroenterologists and scientists from academic centers around the world to work together to identify and investigate the causes of IBD in infants and young children, and develop new treatments and cures specifically for them. To understand the molecular basis of Very Early Onset of IBD (VEO-IBD), NEOPICS established the interdisciplinary VEO-IBD Consortium, including 13 leading experts in the fields of basic and clinical research. The Consortium partners with more than 100 clinical and academic centers worldwide, and fosters collaborative interactions with its members to facilitate VEO-IBD diagnosis and develop treatment strategies. Learn more about NEOPICS.
The PRO-KIIDS Network and its collaborative studies will illustrate how risk factors present in children with IBD influence the natural history of the disease. It is building upon the remarkable success of the RISK Stratification study, which has allowed for accumulation of biospecimens from an unprecedented number of patients – critical information that can be translated into clinical studies testing the hypothesis that early, aggressive therapy in selected patients may decrease the likelihood of developing severe complications.
PRO-KIIDS investigations have the potential to identify myriad predictors of how young patients will respond to various medications, identify best outcomes and educate physicians as to the best treatment options for their pediatric IBD patients. The result is more targeted and effective therapies for individual patients, better quality of care and improved patient health outcomes.
The wealth of data and findings gathered through PRO-KIIDS studies will be housed in CCFA's IBD Plexus, the largest and most innovative research and information exchange platform created to date. Using IBD Plexus’ powerful data management platform, RISK, PROTECT and other study data can be studied in conjunction with data from other CCFA initiatives (i.e., Genetics and Microbiome Initiatives), promising an exponential increase in our avenues of investigation into the causes and cures for IBD.