Posted by Sarah Nocito on February 04, 2020
ImproveCareNow has had enormous success since it began 13 years ago, including increasing remission rates for thousands of youth with IBD, transforming how pediatric IBD care is being provided, enlightening and exciting clinicians and other care providers, and engaging patients and parents in a shared purpose and work. We are pleased to share our ImproveCareNow Annual Update, which includes highlights and achievements from 2019 and plans for our continued work to improve health, care and costs for young people with IBD in 2020 and beyond.
In 2019 ImproveCareNow:
- sustained active participation across our network of 110 care centers with 30,000 patients and 1,200 clinicians, including 950 pediatric gastroenterologists
- continued important work supported by a $1 million grant from the Clare Foundation to study and implement methods to empower patients, and an award of $2.5 million from the Patient Centered Outcomes Research Center Institute (PCORI), for a study of the effectiveness of the Specific Carbohydrate Diet in Crohn’s disease (called PRODUCE), using a novel investigative method called “n of 1” or personalized trials
- continued conducting its first clinical trial (called COMBINE) to evaluate whether, for children and adolescents with Crohn's disease who need to start Remicade or Humira medication, adding another medication called methotrexate leads to better outcomes
- developed our ability to facilitate clinical trials of new drugs developed by pharmaceutical companies to make them more rapidly and readily available to pediatric patients with IBD
- collaborated with Takeda to facilitate their pediatric trial of vedolizumab (Entyvio), which was completed in 2019 in part due to the contributions of ImproveCareNow to enable its centers to enroll patients at higher rates than non-ImproveCareNow centers
- continued an alliance with IQVIA (one of the largest global Contract Research Organizations and provider of data information, services and technology for the healthcare industry) in creating the ICN-IQVIA RESPECT (Rapid Engagement, Startup & Precision Enrollment Clinical Trials) Network, with a goal of 25 trials-ready ImproveCareNow centers
- launched Pathway to Mastery, an exciting new program for ImproveCareNow centers to drive an energetic focus on mastering and applying improvement science skills and tools to improve outcomes
- received 10 new proposals for research; the ICN Research Committee reports that 45 studies are underway or have been completed and another 2 studies are currently under consideration
- recorded 9 ImproveCareNow research publications in medical journals, 5 published abstracts, and 5 poster presentations
- put our mottoes (we all teach, we all learn; we steal shamelessly and share seamlessly; we know that to go fast you go alone, but to go far we go together) into action at in-person Community Conferences, which brought together a total of 462 registrants, including 58 parents and patients.
As the ImproveCareNow community continues to work together through 2020 and beyond, the journey promises to be full of exciting discovery, improvement and innovation, as we:
- Develop the myICNhome® online platform to meet the needs of families when they first learn their child has Crohn’s disease or ulcerative colitis
- Develop an enhanced ICN Exchange for easier better sharing and communication among the ImproveCareNow center team participants
- Expand our research program to learn more about inflammatory bowel disease and its treatment and management
- Explore how we could begin to include pediatric surgeons and pediatric liver specialists in the ICN community
- Strengthen our collaborations to facilitate the development of new drugs, and
- Enhance our communications program for more effective and timely engagement of patients and families.
Currently half the children and youth cared for by pediatric gastroenterologists in the US are at participating ImproveCareNow centers. Our goal is to have all children and youth with Crohn’s disease and ulcerative colitis cared for at an ImproveCareNow center, where 82% of patients are in clinical remission (feeling well and fully active), 90% have satisfactory nutrition, 94% have satisfactory growth and 96% are not taking steroids. We are eager to have you join us as we work together to improve the care and health of children and youth with Crohn's disease and ulcerative colitis.
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