ImproveCareNow Research


Opportunity - Recruiting Participants for a Research Study

(This opportunity is available through March 2019)

Researchers at Drexel University are interested in understanding body image concerns and disordered eating behaviors in adolescents with Inflammatory Bowel Disease. This voluntary study is an online survey that is estimated to take 20-30 minutes to complete, and will ask participants to answer a variety of questions about your eating behaviors, quality of life, and emotional health. Participating in this study is your choice and will not impact your care. This study has been reviewed by the Drexel IRB.

You can take the survey here:

https://redcap.drexelmed.edu/redcap/surveys/?s=9KYWNAE3Y9

Or contact the study coordinator, Jennie David 

Click to view full-size study flyer

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WHEN
December 01, 2018 at 12am - March 31, 2019 at 1am

Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


ImproveCareNow Partnering to Survey Caregivers of Individuals with Inflammatory Bowel Disease

The National Alliance for Caregiving, in partnership with the Crohn's & Colitis Foundation and ImproveCareNow, is launching a first-of-its-kind survey of Inflammatory Bowel Disease (IBD) caregivers. The survey, which is being conducted by researchers from Crimson Research at New Mexico State University, is seeking feedback from family caregivers of children and adults living with Crohn's disease or ulcerative colitis, the two major types of IBD. "Through this survey, we hope to capture the power behind these unpaid friend and family caregivers and to articulate what they are doing so that they can serve as a model for caregivers in other communities," explains C. Grace Whiting, President and CEO of the National Alliance for Caregiving. 

Take the Caregiver Survey >>


Pediatric Fistulizing Crohn’s Disease Study

A:

Purpose: Crohn’s disease causes fistulas, which are abnormal openings from the bowel to adjacent structures such as the skin, bladder, genitals, or to other loops of bowel.  Fistulas frequently lead to serious and sometimes debilitating complications. 

Fistulas have a major negative impact on quality of life of children and their caregivers and are highly distressing.  Fistulas can cause many complications including fecal incontinence, infertility, chronic draining wounds, abscesses, and severe infections of the bladder, kidneys, uterus, or other internal structures. Fistulas are difficult to treat, requiring expensive medications and surgery, and treatments are often not effective. Strategies are needed to prevent fistulas from developing in the first place.

This study is designed to answer several important questions:

  • What are the characteristics of children who at the greatest risk for developing fistulas? 
  • Does early selection of therapy alter the risk for fistulas among children? 
  • Does the risk of fistula among children change with the duration of disease?

Primary Outcomes: 

  • Developing perianal fistula
  • Time to perianal fistula development

Secondary Outcomes:

  • Medication use
  • Surgery

Funding Source: Shaevsky Family Research Fund for Crohn’s Disease

Study Period: 2013-2022

Recruitment Status: This study involves secondary data analyses. No patient recruitment at this time.

Contact: ImproveCareNow Research


Variation in Presentation of Pediatric Colitis

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Purpose: The severity and extent of ulcerative colitis can vary from limited proctitis (only the rectum) to pancolitis (the entire colon). Adults are more likely to have limited proctitis, while children are more likely to have pancolitis at the time of diagnosis.  Beyond that, little is known about the variation in colitis among different pediatric age groups.  The purpose of this study is to describe the extent of colitis at the time of diagnosis among pediatric patients with ulcerative colitis and indeterminate colitis (also called IBD-U).

Primary/ Secondary Outcomes

  • Primary Outcome: Extent of colitis
  • Secondary Outcome: Other patient characteristics

Funding Source: N/A

Study Period: 2016-2019

Recruitment Status: This study involves secondary data analyses. No patient recruitment at this time.

Contact: ImproveCareNow Research


Clinical Research 101

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David Wohl (parent of a child with Crohn's disease) and Mike Kappelman (pediatric gastroenterologist at UNC Children's), in collaboration with the Crohn’s & Colitis Foundation, ImproveCareNow, and NASPGHAN, have developed a slide set and pre-recorded webinar to help patients & families understand more about the purpose and process of clinical research, including clinical trials. The aim is to provide education to patients and families, and increase awareness about clinical research so that when they are approached and asked to participate in a clinical research project they can have an idea of what may be involved. Care teams can choose to incorporate the slides or webinar recording into local educational programs (i.e. an IBD education day), or share the resources with patients and families directly when discussing clinical trials. We hope these Clinical Research 101 resources are useful to patients, families, and IBD care teams.

Clinical Research 101: Patients and Clinicians Gearing up to Discover Together – View Presentation

Understanding the Importance of Pediatric Clinical Trials - Parent Guide 

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Nicole Learns about Clinical Trials – Patient GuideNicole_Learns_about_Clinical_Trials_-_thumb.JPG


Personal experience with nutritional interventions

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.


Being involved is empowering!

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.


June 13 Virtual Community Conference - Join Us!

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on June 13 between 4:30 and 8pm ET for our Spring 2018 Virtual Community Conference. Read more to see the agenda for this event. 


PRODUCE Study Officially Enrolling Patients to Learn More About Specific Carbohydrate Diet in IBD Management

The PRODUCE Study is now officially enrolling eligible participants. Four ImproveCareNow centers, including Seattle Children’s Hospital, Stanford Children's Health, Nemours Children's Health System - Wilmington, and Children’s Mercy are actively recruiting participants. The remaining seven centers should be recruiting participants by May.


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