ImproveCareNow Ibd


Here is Wesley's Story...

Wesley before being diagnosed with Crohn's disease Wesley at five years old

Wesley was diagnosed with severe Crohn's disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable. 


Christian's Journey: The Final Chapter

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.


Christian's Journey: Part 4

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.


It's time to Vote!


Nine patient-designed t-shirt conceptsCheck out these nine amazing designs!

 


Christian's Journey: Part 3

The interstate takes us through a Navajo reservation. It’s time to switch drivers, but there are no exits. Daniel slows from eighty and stops us on the wide shoulder next to dark grassland and a wire fence. I pull down the ceiling flap and open the mirror. My eyes are red. Sand from the dunes scratched them up, and the burn of the open windows left me squinting. When I rub them, little tears form at the corners and slide down my cheeks.


Christian's Journey: Part 2

The first three hours of the drive are easy. Daniel takes us out of government land, and we watch the sun set behind clouds that drop streaks of rain over the prairie. Although we had already been in the car for nearly ten hours before leaving the dunes, the adrenaline keeps us comfortable. I lean my seat back and put my feet on the dash until it is time to switch. My right hand grips the steering wheel and I rest my foot just above the brake in case my eighty mile-per-hour pace becomes too fast.


T-Shirt Design Contest


Spring 2015 T-Shirt Design PictureImproveCareNow (ICN) is sponsoring its first patient-designed t-shirt contest. Pediatric patients living with Crohn’s disease and ulcerative colitis (IBD) are encouraged to submit their designs through August 16. This is not limited to patients receiving care at participating ICN centers. Online public voting to select the winning design will take place between August 18 and 23. The winning design will be announced on Facebook, and by email. The winning design will be featured on an original ICN t-shirt that will be available for sale through September 4.


Christian's journey: Night Visions Part 1

I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.


Notes from the Field: Front Desk Staff Key to Patient Partnership

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!




The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

 

 


ImproveCareNow Registry (ICN2) Provides Insight into Crohn’s Disease Complications

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”).

 

Identifying Perianal Crohn's Disease FINALUsing 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.

 

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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.


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