ImproveCareNow Research


A Guide to Gutsy Living

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.


Parents in Research – Updates from the PWG Research Subcommittee

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My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.


Research should benefit patients

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I'm Joshua – a 21-year-old Stanford senior. I was diagnosed with Crohn's in the 7th grade and have been, for the most part, in remission since then (I've been on Remicade pretty much continuously). Most people don't know that I can roll my stomach – I'm a pretty open book, so that's all I got!

Since I've only experienced Crohn's-related symptoms 2-3 times in my life, whenever I have any GI symptoms or problems, I always get anxious that "the Crohn's has come back." It can be mentally exhausting at times, but luckily school keeps me busy and distracted.


Top Ten LOOP Posts of 2017

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LOOP is making an impression on the IBD community! In 2017 LOOP was recognized twice as a top blog for Crohn’s disease – 19 of 100 by Feedspot and Top 10 by Medical News Today! This is a direct result of the variety and quality of stories and perspectives shared by so many members of the ImproveCareNow community!

In 2017, 50 posts were published by 36 ICN community members! And 18 people posted for the very first time during the year. Posts covered topics like: IBD research, new PAC member intros, ICN event updates, what I wish you knew, and many open & honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, LOOP posts of 2017!


 


Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness in Anti-Tumor Necrosis Factor-Naïve Pediatric Patients with Crohn’s Disease in Clinical Practice

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The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.


Working Together to ImproveCareNow: An Example of Research Co-Production

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

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Working Together to ImproveCareNow: Building Opportunities for Research Co-Production

ImproveCareNow believes in doing research with parents/patients, not for or about them. The practice is called Research Co-Production and it means that parents/patients are not only participants in research, but also that they are team members involved in coming up with research questions, designing research studies, running the studies and sharing the findings. We believe that co-producing research can make it more relevant and improve the quality.

Traditionally, research has not been done this way. So it’s up to us to design a system that supports this type of partnership. Here’s how we’re building opportunities for research co-production in ImproveCareNow.


A Parent’s Report from the Advances in IBD – 2016 Conference

Come the end of the year, the Crohn’s and Colitis Foundation of America (CCFA) organizes Advances in IBD, a medical conference dedicated to topics in IBD research and care. The foremost clinically-oriented IBD meeting in the US, this conference attracts both adult and pediatric clinicians.

Per tradition, Advances in 2016 is held in Florida. And, that is how I found myself in the Magic Kingdom, rubbing shoulders not only with Mickey and Minnie but with the biggest names in IBD. As the parent of a 12 year old child living with Crohn’s disease, I was attending in the hopes of moving beyond the ‘IBD 101’ webinars and the usual CCFA-supported patient educational sessions to gain a higher-level understanding of the issues at the cutting edge of IBD management. If knowledge equals power, I needed to level-up and Advances seemed like the perfect place to do so. Unfortunately, I learned there is no clear path for parents or patients to register for this conference (co-production comes slowly in medicine). But, after some discussion with the good folks at CCFA, I was able to sign-on as a physician (having gone to medical school does come in handy), even though I am neither a gastroenterologist nor an IBD specialist. So, it was as a parent-mole that I sat among the sea of clinicians, feeling a bit like an imposter, and jotting down what I found of greatest interest from the perspective of a person affected directly by IBD. What follows are these observations – admittedly filtered by my personal experiences as #DadofkidwithIBD


Implementing Transition & Transfer of Care Systems in Pediatric IBD

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.


Study Evaluating Specific Carbohydrate Diet Named by ICN Community

In August funding was announced for a study examining the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in pediatric patients with Crohn’s disease and ulcerative colitis using a combination of “N of 1” methods and mHealth technology. This study has been named by the ImproveCareNow community.


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