CCFA Partners: Building a Platform for Success
Join the almost 10,000 people who are already a part of this groundbreaking study. CCFA Partners is an Internet-based cohort study that partners CCFA with inflammatory bowel disease (IBD) patients in an online community. The online program can rapidly and efficiently collect information from IBD patients across the country in order to learn about the impact of IBD on their health and quality of life.
The registry focuses on health, diet, prevention, and treatment. By focusing on reports directly from IBD patients, this initiative is an important addition to many of the other clinical research projects supported by CCFA that have relied mainly on reports from physicians.
The founder of this program is Lloyd Mayer, M.D., the immediate past chair of CCFA's National Scientific Advisory Committee (NSAC). A gastroenterologist and immunologist, Dr. Mayer has believed for some time that there are pieces to the IBD puzzle that only patients can provide.
After learning about the European Crohn's and Colitis Organization's (ECCO) vast Crohn's disease and ulcerative colitis patient experience database several years ago, Dr. Mayer comments, "It reinforced that we should mobilize our patient population because we have, hand over fist, the majority of patients in the developed world."
With the goal of building a similar database, CCFA Partners was designed as a means of communication with patients and families. Dr. Mayer explains, "We now have the ability to standardize medical care and protocols. We can educate patients who are in the study to become their own allies." CCFA Partners strives to communicate latest trends in treatments and preventions through its website and patient update messages.
The CCFA Partners program has huge potential to broaden our understanding of pediatric IBD. Michael Kappelman, MD, MPH, a pediatric gastroenterologist and epidemiologist at UNC, is a co-investigator on the CCFA Partners team. He understands, as a pediatrician, the interest from parents of children, 18 and under, in enrollment in a study of this type.
Dr. Kappelman adds, "There is a lot to report in children, it is the same illness, however, the experience with illness is wildly different because of the developmental perspective. This is a vested population that would be very good partners."
CCFA is committed to funding the addition of this crucial segment, tentatively targeted for 2012.
Help Us Make a Difference
The patients already enrolled in CCFA Partners have laid the cornerstones of a legacy of knowledge. If you know patients who could enroll, speak out. The voices of volunteers have made all the difference in the numbers enrolled to date.
For further information, call the Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help Center): 888.MY.GUT.PAIN (888.694.8872).
The Crohn’s & Colitis Foundation of America provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.
About this resource
Published: May 31, 2011