The University of Manitoba IBD Research Registry

When we developed the University of Manitoba IBD Epidemiology Database volunteers mailed back surveys that informed us of their willingness to participate in the University of Manitoba IBD Research Registry. The difference between the University of Manitoba IBD Epidemiology Database and the University of Manitoba IBD Research Registry is that the Database is anonymous and with it we can determine the total of Manitobans with Crohn’s disease and ulcerative colitis and identify patterns in the incidence rates of disease, in their health care utilization, and in other disease diagnoses they might have.

In the Research Registry people enrolled are known to us. They have informed us whether they are willing to have us contact them for other research studies. We enrolled volunteers for our Manitoba IBD Cohort Study and our Manitoba IBD Risk Factor Study from our Research Registry. Up until August 2012 there were approximately 3500 Manitobans registered in our Research Registry. In the spring of 2008 we conducted a mail-out through Manitoba Health to persons that might have been diagnosed with IBD between 2000-2007.

We plan to repeat this mailout in the spring of 2013 to recruit those diagnosed with IBD in 2008-2012. The Registry is kept secure in our offices and all information is deemed highly confidential.

If anyone with a diagnosis of IBD is willing to be enrolled in our Registry and has not previously enrolled, please call Norine Miller at 204-787-4741 . If Norine is not available please leave a message and your call will be returned. Collect calls accepted

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FINDINGS FROM THE IBD RESEARCH REGISTRY

The following are some of the other projects we have done through our Research Registry:

New studies published 2011-2012

Bernstein MT, Graff LA, Targownik LE, Downing K, Shafer L-A, Rawsthorne P, Bernstein CN, Avery L. Gastrointestinal symptoms before and during menses in women with IBD. Alimentary, Pharmacology and Therapeutics 2012; 36: 135-144.

In this study we explored whether women with IBD had different rates of gastrointestinal or emotional symptoms from healthy women without IBD. 151 premenopausal women with Crohn’s disease, and 87 with ulcerative colitis from our Research Registry and 156 premenopausal controls completed surveys. The mean age of menses onset was similar in all 3 cohorts and the percentage in each group with regular menstrual periods was similar. Premenstrually, abdominal pain was less commonly reported by women with ulcerative colitis (36.8%) than with Crohn’s disease (51%, p=0.034) and than controls (57.6%, p=0.002). Premenstrually, and during menses diarrhea was more commonly reported by women with Crohn’s disease (47.7% and 59.6%, respectively) than women with ulcerative colitis (26.4% p=0.001 and 42.5%, p=0.01, respectively) and than controls (24.4%, p<0.0001 and 28.2%, p<0.0001, respectively). Premenstrually, women with Crohn’s disease (46%) vs women with ulcerative colitis (26%) were more likely to report worsening of their IBD symptoms (p=0.0007), but there was no difference between Crohn’s disease (47%) and ulcerative colitis (39%) for reporting worsening during menses (p=0.24). We concluded that compared to healthy women, women with IBD had similar symptom experiences premenstrually, except that those with Crohn’s disease were more likely to have increased diarrhea premenstrually. During menses, women with Crohn’s disease or UC were more likely to experience diarrhea than healthy controls. Hence when women with IBD have increased diarrhea around the time of their periods it should imply a flare of their IBD per se.

 

Singh S, Blanchard A, Walker JR, Graff LA, Miller N, Bernstein CN. Common symptoms and stressors among individuals with inflammatory bowel disease. Clinical Gastroenterology and Hepatology 2011 Sep;9(9):769-75. Epub 2011 May 20.

This study was a follow up report to our report on factors associated with trigger of flares of IBD in 2010. From this cohort we reported that  in any 3-month period, participants with Crohn’s disease, compared with those with ulcerative colitis, reported more diarrhea (63% vs 38%), fatigue (54% vs 33%), abdominal pain (47% vs 32%), aching joints (42% vs 29%), painful joints (24% vs 16%), fever or night sweats (24% vs 15%), nausea/vomiting (18% vs 7%), and reductions in appetite (19% vs 11%) (P < .001 for each symptom). Individuals with ulcerative colitis complained more of stool mucous or blood than those with Crohn’s disease (27% vs 17%; P < .001). In periods of inactive disease, participants still experienced symptoms such as aching joints (17%), fatigue (15%), diarrhea (13%), or abdominal pain (9%). In any 3-month period, approximately 50% experienced some type of stress; family stress was the most commonly reported form, followed by work or school and financial stress.

We concluded that diarrhea and fatigue are the 2 most common symptoms of individuals with IBD. Those with inactive disease still report symptoms. Almost 50% of participants reported significant stress in any 3-month period, but the primary types were everyday life stressors more so than health-related stress. This is one of the only published reports to document the symptoms and stresses commonly reported by persons with IBD whether they have active or inactive disease.

Studies published in 2009-2010

Bernstein CN, Singh S, Graff LA, Walker JR, Miller N, Cheang M. A prospective population-based study of symptomatic triggers of flares in IBDAmerican Journal of Gastroenterology 2010; 105: 1994-2002 .            

700 persons enrolled in a study to complete questionnaires every 3 months for 1 year about their disease activity as well as their use of anti-inflammatory drugs (like Ibuprofen), antibiotics, and their experience of infections as well as stress.  We found that the only factor that was associated with a flare of disease activity was having a high perception of stress.  The use of anti-inflammatory drugs or antibiotics was no more common in those whose disease flared than in those whose disease remained inactive. Clinicians need to address stress and the perceptions of stress among their patients with IBD.

 

Link to Research Registry Archive Studies