Posted by Sarah Nocito on January 24, 2019
ImproveCareNow has had enormous success since it began 12 years ago, including increasing remission rates for thousands of youth with IBD, transforming how care is being provided, enlightening and exciting clinicians and other care providers, and engaging patients and parents in a common mission and work. We are pleased to share our ImproveCareNow Annual Update, which includes highlights and achievements from 2018 and plans for our continued work to improve health, care and costs for kids with IBD in 2019 and beyond.
In 2018 ImproveCareNow:
- expanded our network to include 109 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
- undertook collaborative studies, with research funding from AbbVie, Takeda and Celgene, which utilized data from the ImproveCareNow registry to examine the effectiveness of adalimumab in Crohn’s disease and ulcerative colitis, the use of sequential biological agents and the impact of Crohn’s disease and ulcerative colitis on growth
- 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
- launched ENROLL in Hubble, a collaboration with Takeda to facilitate their pediatric trial of vedolizumab (Entyvio), and began collaborations with Eli Lilly and Genentech
- formed an alliance with IQVIA (one of the largest global Contract Research Organizations and provider of data information, services and technology for the healthcare industry) to begin creating the ICN-IQVIA RESPECT (Rapid Engagement, Startup & Precision Enrollment Clinical Trials) Network
- received 6 new proposals for research; the ICN Research Committee reports that 26 studies are underway or have been completed and another study is currently under consideration
- recorded 4 ImproveCareNow research publications in medical journals, 15 published abstracts, 8 oral presentations at a national research meetings and 11 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 529 registrants, including 54 parents and patients.
As the ImproveCareNow community continues to work together through 2019 and beyond, the journey promises to be full of exciting discovery, improvement and innovation, as we:
- Develop a program to meet the needs of families when they first learn their child has Crohn’s disease or ulcerative colitis
- Expand our research program to learn more about pediatric inflammatory bowel disease
- Explore how we could begin to include pediatric surgeons and pediatric liver specialists in the ICN community
- Increase our collaborations to facilitate the development of new drugs
- Enhance our communications program for more effective engagement of patients and parents.
Currently 55% of children and youth cared for by pediatric gastroenterologists in the US are at participating ImproveCareNow centers. Our mission 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, fully active, and able to do the things they love), 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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