Jeff Savarino and the team at MassGeneral Hospital for Children (MGHfC) are improving the clinical remission rate for kids with Crohn's disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD).
ImproveCareNow Network to Participate in $2.5 Million Research Study Evaluating Specific Carbohydrate Diet in Pediatric IBD
Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet
A team from ImproveCareNow led by Heather Kaplan, MD, MSCE and Lisa Opipari-Arrigan, PhD will take part in a $2.5 million research project in partnership with the Health eHeart Alliance, to conduct a study using an innovative combination of “N-of-1” study designs and mobile health technology. ImproveCareNow will focus on using a series of N-of-1 studies to understand the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) as compared to a liberalized SCD and unrestricted diet.
ImproveCareNow Registry Used to Evaluate Use of Concomitant Immunomodulators with Adalimumab Therapy in Crohn’s Disease
Adalimumab (ADA) is an important biologic drug used in the treatment of pediatric Crohn’s disease. In May at Digestive Disease Week 2016, a meeting of gastroenterologists from around the world, Dr. Keith Benkov presented research examining variation in the use of Adalimumab monotherapy and concomitant therapy with an immunomodulator in pediatric Crohn’s disease. The cross-sectional analysis was completed using data from the ImproveCareNow Registry (known as “ICN2”).
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A new video featuring Peter Margolis, MD, PhD highlights how ImproveCareNow's partnership with PCORnet is enabling the network to design and deliver better care for and with patients with Crohn’s disease and ulcerative colitis, and how it is accelerating the pace of research that will answer important questions about these diseases.
The goal of medical research is to find answers that will improve the lives of patients. ImproveCareNow is committed to ensuring the research we support is answering the questions that matter most and will have the greatest potential to impact our community. During 2015, the ImproveCareNow community identified the most important areas where we should be focusing research. Through the Patient Priorities platform, suggestions were submitted for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics.
“A journey of a thousand miles begins with a single step” – Chinese philosopher Laozi, 6th century BC
With great admiration, I have been witness to the strides that ImproveCareNow (ICN) has been making in our research efforts. As co-chair of the Research Committee, I am able to observe all of the wonderful ideas that the community puts forth for consideration. As with any learning curve, every step is not smooth, and we occasionally stumble and fall. Our colleagues are next to us ready to offer a helping hand though.
ImproveCareNow Registry (ICN2) Used to Characterize Extent of Disease at Presentation of Ulcerative Colitis
The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).
ImproveCareNow is being highlighted by the Agency for Healthcare Research and Quality (AHRQ). AHRQ previously provided funding to help create enhancements of the ImproveCareNow registry, including automated population management, pre-visit planning, Quality Improvement performance and data quality reports. The efforts of physicians, improvers, parents and patients are also highlighted.
Perianal disease is an important complication of Crohn’s disease in children. In May at Digestive Diseases Week 2015, a meeting of nearly 15,000 gastroenterologists from around the world, Dr. Jeremy Adler (@jeremyadlermd) presented research investigating instances of perianal disease (perianal fistulas, fissures and other perianal lesions) in pediatric Crohn’s disease, using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).
Using data from ICN2, Adler’s research team identified racial and regional differences in the development of perianal disease across multiple centers in the ImproveCareNow Network. Their research has shed light on when perianal disease most commonly occurs (early in pediatric Crohn’s disease) and suggests that early therapy should be aimed at fistula prevention. They concluded that the ICN2 registry is a valuable tool for population-based studies (like this one, which included data from many patients with IBD, across many different geographic areas), and suggest that more studies like this one be conducted to identify and evaluate preventative therapies for complications of Inflammatory Bowel Disease (like perianal disease).
This novel pediatric IBD research highlights the power of data, carefully collected and curated over time, to answer questions about complex conditions such as Crohn’s disease and ulcerative colitis and to shine light on ways we can work to improve the care and the health of patients in the near term.
ICN2 is the largest and fastest growing pediatric IBD registry in the world, with data from over 19,000 patients with IBD and 115,000 visits as of May 2015. The ImproveCareNow Network currently includes 75 participating pediatric IBD centers in 34 states and the District of Columbia and two in England, with nearly 45% of Crohn’s disease and ulcerative colitis patients cared for by US pediatric gastroenterologists. The purpose of ImproveCareNow is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. Data in the ImproveCareNow registry is used for improvement, research and innovation.
Editor's note: The ImproveCareNow registry (ICN2) has grown dramatically over the past several years, and now, from the research standpoint, we are beginning to see the fruits of that labor. Jeremy Adler and colleagues have used the registry to carefully describe a specific phenotype of pediatric Crohn's disease across the network. We are only beginning to scratch the surface in utilizing not only the registry, but also the rich community network upon which ImproveCareNow is built. More and different types of research efforts are coming, and hopefully, the number of studies will continue to grow as quickly as the number of centers and patients have grown within the network.
Did you catch the article in HuffPost Health News about a large-scale comparison between the efficacy of Mindfulness Based Cognitive Therapy (MBCT) and anti-depressants?
This area, MBCT, is a growing interest of mine and I’m hoping to attend some trainings on it. I have informal training on mindfulness and use it myself, to great benefit! Here’s what I would say to someone else…
Mindfulness techniques, as part of research-informed cognitive behavioral therapy, has already demonstrated benefit in use with patients with chronic illness. Although the body of literature supporting this practice with children is not as established as it is with adults, Mindfulness Based Cognitive Therapy shows much promise in helping pediatric patients (ages 8 and older) with IBD!
The general purpose of MBCT is to help the patient be fully aware and in the present moment, and then begin the change process within that present focus. That includes awareness of how they are feeling and what they are thinking, including whether their thoughts and feelings are really focused on the past or future. Mindfulness is itself a positive change for most people. Depression often comes from a focus on painful thoughts and memories from the past, or on worry and sadness about the potential future. Because of this, the thoughts and feelings typical of depression can actually prevent the person from being able to enjoy the current moment, cope well with stressors in the current moment, or see the positive good in his or her future. Mindfulness techniques help give patients that present focus back, which allows them to challenge negative thoughts about the future or past better, and helps them create room for change.
Although more research is needed, MBCT shows much promise for our pediatric IBD community. First, we would all agree children should be able to enjoy something each day! When they are worried about the future or sad about the past, they aren’t able to get the most of out of their life. MBCT can give children opportunity to bring their attention back to what is going right, and give them positive space to learn how to get the most out of each day. That puts them on a path for future success both in their physical lives and in their emotional lives.