PRO KIIDS Society

IBD’s cure is yet to be discovered and evidence unfortunately points to a growing rise in the number of children and teens diagnosed.  The need to understand IBD and its effects on children have never been greater.  The Pediatric Network is a groundbreaking initiative, launched by the Crohn’s & Colitis Foundation for this exact reason.

 

The Pediatric Network is a collaboration of more than 30 centers throughout the US and Canada including one in Indiana.  This network of institutions is gathering data from newly diagnosed pediatric patients to build the foundation for research that will enable physicians to better predict a patient’s prognosis at the time of diagnosis, customize individualized therapy and decrease toxicity often caused by the trial and error method of treatment.

 

Bottom line: The Pediatric Network can help our sick kids get better faster, allowing them to lead healthier and happier lives.

 

Make an impact. Join the Indiana PRO KIIDS Society to support the Research Center in Indiana.  Partner with us as we endeavor to raise $30,000; this amount will fund the Indiana Center for a whole year! Society members will be recognized at their respective giving levels throughout the year long campaign in chapter wide mailings,

e-newsletters and at CCFA Indiana Chapter events (see attached document for giving levels). 

 

Your gift, matched dollar for dollar, can make a huge difference towards our goal and towards the success of this program.  Please consider joining the PRO KIIDS Society!

 

Indiana PRO KIIDS Society
A HUGE THANK YOU to the 2012 Indiana PRO-KIIDS Society!

 

 

Lead Investigators ($2500+)

Mark and Pam Maddox*

 

Research Fellows ($2499-$1000)

Mr. and Mrs. Steve and Laura Warner

 

Research Assistant ($999-$500)

Mr. David Charles

Dr. and Mrs. Sachin Dave

Mr. and Mrs. Pruthvash Pandya

 

 

*Mr. and Mrs. Mark Maddox have committed to matching all gifts to the PRO-KIIDS Society

pledged by December 30th,2012 dollar for dollar up to $5,000.

 

 

Contact the CCFA office if you'd like to donate to the Pro-KIIDS Society!  

 

Background

Evidence unfortunately points to a rise in the number of pediatric patients diagnosed with inflammatory bowel diseases (IBD). Of these children, some show mild disease activity and do well with basic medication. However, many others exhibit more a more severe disease trajectory with growth failure, continued active gastrointestinal symptoms, and the eventual development of disease complications requiring surgery. To decide an appropriate course of treatment, it is important to identify at time of diagnosis those children most likely to require aggressive medical therapy. However, good quality, pediatric-specific data is either limited or non-existent so treatment is based on adult data. Much-needed pediatric specific information can only be obtained by a large scale multi center collaborative effort.

 

Project Description

The first study of the Pediatric Network utilizes a design called risk stratification of an inception cohort. The purpose of the RISK Stratification study is to enroll pediatric patients at the time of diagnosis of Crohn’s disease to participate in long-term studies to understand progression of disease. The largest study of its kind, the RISK study gathers patient biospecimens for identifying genetic, clinical, microbial, and immunologic markers. By integrating and contrasting the genetic and microbial data with disease progression of the patient, investigators expect to be able to predict aggressive versus benign disease as well as response to therapy. This study is currently operating across 29 centers with over 1,709 patients enrolled.

 

Building on the success of RISK, study centers are also collaborating on the Predicting Response to Standardized Pediatric Colitis Therapy, or PROTECT study. Researchers in the PROTECT study will conduct a clinical trial of standardized medical therapy for 410 children newly diagnosed with ulcerative colitis at 17 pediatric IBD centers in North America. Investigators will follow patients for two years, collecting data that will prove invaluable for the study of IBD. The primary clinical goal of both of these projects is remission for one year without the use of steroid medications or the need for more potent immunosuppressive medications or surgery.

 

Significance

If successful, the Network will illustrate how risk factors present in children with IBD influence the natural history of the disease. The remarkable success of the RISK Stratification study has allowed for accumulation of biospecimens from an unprecedented number of patients. This information can be translated into clinical studies testing the hypothesis that early aggressive therapy in selected patients may decrease the likelihood of developing severe complications. The potential is to identify myriad predictors of how patients will respond to various medications. Studies will identify best outcomes and educate physicians as to the best treatment options for their young patients producing more targeted and effective therapies for individual patients.