Objective Assess caregivers’ knowledge about juice and sugar-sweetened beverages (SSBs) and identify factors that contribute to their early introduction. Methods One hundred forty-four parents of young infants completed a 45-item questionnaire focused on infant nutrition. Results Seventy-two percent of parents plan to give juice to their babies starting in the first year of life; only 16% plan to introduce SSBs. Parents with some college education or more were significantly less likely to report an intention to introduce juice (P < .0001) and SSBs (P < .001) in their children’s diets. Education level was significantly associated with knowledge about juice and SSBs (P < .001). Parents with higher knowledge were significantly less likely to plan on introducing juice (P < .001) and SSBs (P < .001). Conclusion Parents of young infants lack enough knowledge about the detrimental effects of juice and sugary drinks. These knowledge gaps give pediatric providers a unique opportunity to provide anticipatory guidance starting in early infancy on the adverse health effects of juice and SSBs.

The impact of dietary behaviors on health outcomes in youth with inflammatory bowel disease (IBD) is unclear. The present study examined dietary behaviors and their association with biomedical factors in youth with IBD. Eighty-six newly diagnosed youth (mean age=12.6) were included in analyses. Biomedical factors included disease activity and inflammatory markers. Despite adequate total caloric intake, estimated nutrient and fruit and vegetable intakes were below recommended levels. There was a significant negative association between vegetable intake and C-Reactive Protein (p=0.04). Results suggest that dietary behaviors play an important role in IBD health outcomes.

Background:Studies describing the incidence of Crohn's disease (CD) and ulcerative colitis (UC) are uncommon in the United States. We sought to determine the incidence of CD and UC in the state of Rhode Island.Methods:The Ocean State Crohn's and Colitis Area Registry is a state-based inception cohort of patients newly diagnosed with inflammatory bowel disease (IBD) in Rhode Island. To confirm a diagnosis of CD, UC, or IBD unclassified (IBDU), the National Institute of Diabetes and Digestive and Kidney Diseases IBD Genetics Consortium criteria were applied in a review of medical records from gastroenterology practices located in the state of Rhode Island and adjacent to the Rhode Island border in Massachusetts and Connecticut. Using population-based data, we determined the statewide incidence of IBD in Rhode Island from 2008 to 2010.Results:A total of 971 Rhode Island residents were diagnosed with IBD, including 444 with CD, 486 with UC, and 41 with IBD unclassified from 2008 to 2010. The overall age- and sex-adjusted IBD incidence was 30.2 (95% confidence interval, 28.3-32.1) per 100,000 persons in this time frame with 13.9, 15.1, and 1.3 per 100,000 diagnosed with CD, UC, and IBD unclassified, respectively. Of the total incident cases in Rhode Island, 30% (n = 291) were enrolled in Ocean State Crohn's and Colitis Area Registry for follow-up.Conclusions:The incidence of IBD in Rhode Island is higher than that previously reported by other population-based cohorts in the United States. Prospective follow-up of individuals enrolled in the community-based Ocean State Crohn's and Colitis Area Registry cohort is ongoing.

Studies describing the incidence of Crohn's disease (CD) and ulcerative colitis (UC) are uncommon in the United States. We sought to determine the incidence of CD and UC in the state of Rhode Island. The Ocean State Crohn's and Colitis Area Registry is a state-based inception cohort of patients newly diagnosed with inflammatory bowel disease (IBD) in Rhode Island. To confirm a diagnosis of CD, UC, or IBD unclassified (IBDU), the National Institute of Diabetes and Digestive and Kidney Diseases IBD Genetics Consortium criteria were applied in a review of medical records from gastroenterology practices located in the state of Rhode Island and adjacent to the Rhode Island border in Massachusetts and Connecticut. Using population-based data, we determined the statewide incidence of IBD in Rhode Island from 2008 to 2010. A total of 971 Rhode Island residents were diagnosed with IBD, including 444 with CD, 486 with UC, and 41 with IBD unclassified from 2008 to 2010. The overall age- and sex-adjusted IBD incidence was 30.2 (95% confidence interval, 28.3–32.1) per 100,000 persons in this time frame with 13.9, 15.1, and 1.3 per 100,000 diagnosed with CD, UC, and IBD unclassified, respectively. Of the total incident cases in Rhode Island, 30% (n = 291) were enrolled in Ocean State Crohn's and Colitis Area Registry for follow-up. The incidence of IBD in Rhode Island is higher than that previously reported by other population-based cohorts in the United States. Prospective follow-up of individuals enrolled in the community-based Ocean State Crohn's and Colitis Area Registry cohort is ongoing.

Background:Previous investigations have produced mixed findings on whether youth with inflammatory bowel disease (IBD) experience elevated rates of depressive symptoms. Our first aim was to compare self-report of depressive symptoms by youth with IBD with a community sample. The second aim was to examine the relationship between symptoms of depression and measures of disease activity.Methods:Item-level responses on the Children's Depression Inventory among a sample of 78 youth diagnosed with IBD were compared with responses from a community sample using 1-sample t-tests. Particular attention was given to items assessing somatic symptoms of depression given the potential overlap with IBD disease symptoms. The relationship between depressive symptoms and IBD disease activity was evaluated using Spearman's rank correlation coefficients and linear regression.Results:Youth with IBD reported lower levels of depressive symptoms compared with the community sample on the Children's Depression Inventory Total Score, and similar or lower levels of difficulty on items assessing somatic symptoms. Most of the sample had inactive or mild disease activity at the time of participation, with 14% experiencing moderate/severe disease activity. Higher ratings of disease activity were related to greater depressive symptoms. Responses on somatic items from the Children's Depression Inventory were not differentially related to disease activity.Conclusions:As a group, pediatric patients with IBD did not experience the clinical levels of depressive symptoms or elevations in depressive symptoms when compared with a community sample. Somatic symptoms of depression do not differentiate youth with IBD experiencing elevations in disease activity from youth experiencing nonsomatic symptoms of depression.

This study prospectively examined stability of psychological and behavioral functioning in two matched cohorts of youth with inflammatory bowel disease (IBD): (1) newly diagnosed and (2) previously diagnosed patients. Youth and their parents completed measures of emotional and behavioral functioning at Time 1 and 6 months later. Mean-level analyses indicated that scores at Time 1 and Time 2 were within the nonclinical range. A significant decrease occurred in internalizing symptoms for previously diagnosed patients. Both groups demonstrated high levels of profile stability with no significant differences across groups. Results suggest that emotional and behavioral functioning is generally stable without targeted intervention.

BACKGROUND:Symptoms of inflammatory bowel disease (IBD) include bloody diarrhea, fatigue, abdominal pain, and weight loss. Long-term management of remission for most patients requires adherence to taking 1 or more oral medications daily, in the absence of symptoms. We investigated whether disease characteristics and behavioral characteristics predict adherence to prescribed medical regimens.METHODS:: Patients aged 8 to 17.5 years, newly diagnosed with IBD, and a matched cohort previously diagnosed were studied over a 6-month period. Adherence was assessed using medication electronic monitoring devices (Medication Event Monitoring Systems); participants and parents completed questionnaires regarding emotional and behavioral functioning, and biological parameters were monitored.RESULTS:: Adherence was monitored for 45 newly and 34 previously diagnosed patients. In total, 16,478 patient-days (including 12,066 discrete days) were electronically monitored. Overall, 70.6% of 5-aminosalicylic acid and 65.4% of 6-mercaptopurine doses were taken. Only 25% and 15% of older adolescents took at least 80% of their 5-aminosalicylic acid and 6-mercaptopurine, respectively, compared with about 83% and 64% of 8-year-olds to 11-year-olds. Only age and behavioral issues were statistically linked to rates of adherence.CONCLUSIONS:Adherence to commonly prescribed oral medications for IBD is challenging for patients. Screening for emotional and behavioral problems, especially among older adolescents, would be important in identifying patients at risk of poor adherence, who might benefit from interventions. Biological solutions, although critical, when applied without attention to behavioral issues, are not likely to provide the level of therapeutic benefit that can be provided in a combined biobehavioral approach.

Background:Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn's disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. Methods:We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. Results:During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R2 = 0.395). It was also significantly correlated to adherence alone (R2 = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (rs (9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. Conclusions:Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.

of anti TNF therapy was 33.7± 32.7 months.Twenty-two patients (55%) had Crohn's disease (CD), and 18 (45%) had ulcerative colitis (UC).Remission was achieved by 14 (63.6%) of the CD and 12 (66.7%) of the UC patients, respectively.There were no differences in demographic and clinical characteristics or therapeutic protocols between the CD and UC groups.Similar TL were observed among patients who maintained remission (26/40, 4.7±6.0μg/ml) and those with active disease (14/40, 3.7±5.9μg/ml) (p=NS).Moreover, 10/26 patients who maintained stable remission were found with TL below 1 μg/ml (low TL).Considering the entire cohort, low TL was found in 17 patients, 6 of whom had positive anti-infliximab antibodies while 3/6 were in remission.Of note, 5/40 patients had gradual loss of response throughout their infusion cycle, and were found with relatively lower mean TL, in contrast to those who had maintained stable response throughout the dosing cycle (1.5±1.9 vs. 4.7±6.2μg/ml, respectively p=0.03).Conclusions: While TL may serve to assess loss of response, no correlation was found between clinical response and random TL taken during long term schedule maintenance therapy.Larger cohorts are still needed to assess the long-term predictive value of TL.

startxref 0 %%EOF 64 0 obj <>stream xb``f``98Abl,+&,[)H }I >[ZFDxTEldC+\l35xx}59Lh`a`di8 66 FVWDV<@y KXo):U@2Ì ‡AZBS e)o endstream endobj 30 0 obj <> endobj 31 0 obj <> endobj 32 0 obj <> endobj 33 0 obj <>/ColorSpace<>/Font<>/ProcSet[/PDF/Text/ImageC/ImageI]/ExtGState<>>>/Type/Page>> endobj 34 0 obj <> endobj 35 0 obj <> endobj 36 0 obj <>stream HtTiTSI#`^T7ǦQ9i! ,lD5(@leqÑ¡{3= S8cÔ Uݺ= AnuT&Mae½¿I&K["a 9{_\/ K[Al,Ì"OQ<|=Y)$OÒOE,qØ D@0 _ DÔ x>ÙžJ7﵎`Ħ>?<Û½)v?ç ±2N#l?4aÏ¢$z9Íoe\$}\pbAxnEl"S`Û ]7%^~@qjp|lm"Õ c 2{N <4sY6}nJl~`M6nk~V~qMΰv[G*Ki|]U}QWxbtVʱj_T@bG4]&A[{tnTXc+jÊ•É©}m2ftD79#R]>BKZqÓ…ÓOE䤦VsyFh: ]eR?;È°5d\(x!Ng b)l.yvεUÇŸJ3GapLb.vDuG|m#4Õ¥fZbC./rÂoe

BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-17 years of age. The dosing, including induction, was found to be similar to adult dosing. This study also demonstrated an incidence of serious infections at 5.7%. The most prevalent adverse events were respiratory infections. In 2012, deBie et al. reviewed the literature on the use of anti-TNF medications in pediatric IBD and found adjustments in dosing between 27-49% of the time. The median time to dose adjustment was 6-9 months. After initiation of infliximab, intestinal surgery was performed in 25-35% of patients with Crohn’s disease. There are no reports on the use of infliximab in patients less than 6 years of age. METHODS: This was a descriptive, retrospective chart review of patients with IBD receiving infliximab as standard care for treatment of IBD from June 2002July 2012. RESULTS: Since 2002, our institution has diagnosed 790 patients with IBD; 50 patients (6%) were under 6 years of age at the time of diagnosis. 13 (26%) of these patients with IBD received infliximab when they were less than 6 years of age; 8 diagnosed with Crohn’s disease, 3 with UC, and 2 with indeterminant colitis. The age at diagnosis ranged from 11 months to 66 months with a mean of 37 months. 12 patients presented with bloody diarrhea. The age infliximab was initiated ranged from 15 months to 69 months with a mean of 46 months. 7 patients received monotherapy. Prior to 2008, infliximab was given in combination with mercaptopurine in one patient and azathioprine in 3 patients. Since 2008, methotrexate was given in combination with infliximab in two patients. The number of doses of infliximab given ranged from 2 to 38 with dosage ranges of 4.7 mg/kg to 13 mg/kg. The doses were adjusted in 6 patients, 4 with success. Two patients still on infliximab have not had dose adjustments due to high initial doses (9.3 mg/kg and 12.5 mg/kg). Seven patients had colectomies; two diagnosed with UC, two indeterminant colitis, two diagnosed with Crohn’s after an initial diagnosis of UC, and one patient with severe perianal Crohn’s disease. Six of the patients requiring colectomy were prior to 2008; only one out of 7 patients in the past 4 years required a colectomy. Two patients developed hives after 6-7 doses and one had an acute infusion reaction with facial swelling and desaturation. Other potential complications were limited to one patient with mycoplasma pneumonia, one with recurrent UTIs, and one with recurrent Clostridium difficile. The patient with severe perianal disease has since been diagnosed with IL10RA. CONCLUSION(S): Infliximab was used successfully in 6 out of 7 patients with IBD in the past 4 years. All six patients who received infliximab prior to 2008 went on to colectomy.

Health behaviors, such as physical activity (PA), are important to the development and health outcomes of children, including those with chronic illnesses. Due to concerns related to growth and bone health, PA may be especially important in Pediatric Inflammatory Bowel Disease (Pedi IBD). Previous research examining PA and related factors (i.e., muscle mass) has demonstrated the potential for PA to have a positive impact on IBD health outcomes. However, studies have been limited and results have been inconsistent. It is important to examine PA and other health behaviors in Pedi IBD in order to maximize health promotion and IBD health outcomes. Objective: To examine PA rates and the relationship between PA and health outcomes in Pedi IBD. Children diagnosed with IBD (8.0 to 17.5 years old) were recruited as part of a larger study examining biomedical, behavioral, and adherence factors associated with Pedi IBD health outcomes. All participants were also enrolled in the Pediatric IBD Collaborative Research Group Registry and biomedical data were derived from the registry data. Participants who had completed physical activity questionnaires (N = 51) were included in the analyses. PA questionnaire items were adapted from the Youth Risk Behavior Survey (YRBS) from the Center for Disease Control and Prevention and the International Physical Activity Questionnaire-short form (IPAQ-SF). Overall PA rates were calculated into days per week. Health outcomes were measured by physician global assessment (PGA), height z-scores, and erythrocyte sedimentation rate (ESR). Chi-square goodnessof-fit tests were conducted to examine PA rates compared to state-based proportions from the YRBS. Correlations were conducted to evaluate the relationship between PA and biomedical factors. Average age was 15 years old and 63% were male. Sixty-nine% had Crohn's disease. Average PA rate was 3 days/week. Reported PA rates were not significantly different than state-based YRBS proportions (Table 1). Anthropometric and disease activity characteristics are presented in Table 2. A significant positive correlation was found between PGA and PA days/week (r(47) = .35, P = .02). Participation in organized sports was associated with lower ESR (r(30) = −.36, P = .04), even after accounting for PGA (partial r(28) = −.40, P = .03). Greater time engaged in sedentary behaviors (i.e., >3 hours of computer/video game time per day) was associated with higher ESR (r(39) = .32, P = .04). A significant positive association was found between height z-scores and number of PA days/week (r(35) = .38, P = .02). Rates of PA in Pedi IBD appear to be comparable to those without IBD. Results from the present study suggest that PA is associated with health outcomes in Pedi IBD, with greater PA rates associated with better health outcomes. Study limitations include cross-sectional design and correlational analyses which limit interpretation of directionality, as well as, moderate sample size, and reliance on self-reported activity rates. Given the potential impact PA may have on IBD health outcomes, including growth and development, it is important for future research to 1) continue to examine the relationship between PA and IBD health outcomes, including long-term trends and outcomes; 2) examine factors that promote healthy PA behaviors in Pedi IBD to develop interventions to maximize health outcomes.

very satisfied’’ and ‘very satisfied’. The Medical Outcomes Study (MOS) questionnaire and Inflammatory Bowel Disease Questionnaire (IBDQ) were used to assess QOL. Work productivity was assessed using the Work Productivity and Activity Impairment (WPAI) questionnaire. To measure healthcare resource utilization, the mean number of IBD-related healthcare provider visits in the past six months was calculated, as well as the number of emergency room (ER) visits and hospital visits in the past six months. Bivariate differences between the two satisfaction groups for resource utilization, QOL and productivity were assessed using chi-square tests for categorical variables and t-tests for continuous variables. RESULTS: A total of 783 patients with ulcerative colitis and 778 patients with Crohn’s disease participated in the study. Of these patients, 15% (232/1,561) reported currently using a biologic treatment (infliximab, adalimumab, certolizumab pegol, or natalizumab) and were included in this analysis. Approximately 53% of these patients (n1⁄4124/232) were ‘very satisfied’ with their current medication. ‘Very satisfied’ patients were more likely to be female, have fewer comorbidities, report milder disease severity, and experience less frequent flares, as compared to ‘not very satisfied’ patients (p<0.05). Significantly more of the ‘very satisfied’ patients reported no ER visits during the past six months compared to the ‘not very satisfied’ patients (83% vs 65%, p<0.05). ‘Very satisfied’ patients also had fewer provider visits (2.04 vs 3.3, p<0.05). However, hospital utilization was similar across the two groups. Those patients who were ‘very satisfied’ had significantly higher QOL as well, as measured both by the MOS questionnaire and the IBDQ. Specifically, ‘very satisfied’ patients scored significantly better than ‘not very satisfied’ patients in all of the MOS subscales (p<0.05), except for health transition. The ‘very satisfied’ patients also scored significantly better in each of the IBDQ subscales (p<0.05). In addition, ‘very satisfied’ patients, regardless of current employment status, reported significantly less activity impairment compared to ‘not very satisfied’ patients, (p<0.05). Among currently employed patients (n1⁄4142), ‘very satisfied’ patients also reported significantly less absenteeism, presenteeism, and work loss (p<0.05). CONCLUSIONS: Among patients with IBD receiving biologic therapy, those patients ‘very satisfied’ with current medication reported fewer ER and provider visits, mostly higher QOL and lower productivity impairment as compared to ‘not very satisfied’ patients. The association of biologic treatment satisfaction with healthcare resource utilization, QOL and productivity underscores its potential relevance for not only patients and physicians, but employers and payers as well.

Purpose: The Ocean State Crohn's and Colitis Area Registry (OSCCAR) is a novel population-based, prospective inception cohort of patients with inflammatory bowel disease in Rhode Island. Presenting symptoms of enrolled patients were recorded and analyzed to assess the current presentation of IBD. Methods: Residents of Rhode Island with newly diagnosed Crohn's disease (CD), ulcerative colitis (UC), or indeterminate colitis (IC) were eligible for enrollment beginning January 1, 2008. Diagnosis of IBD was confirmed using criteria from the NIDDK IBD Genetics Consortium. Individuals diagnosed before January 2008, unwilling to provide consent, and those imprisoned or pregnant at diagnosis were excluded. Research assistants collected demographic data, medical history and disease related information, quality of life and disease activity questionnaires, blood, urine and stool samples, with quarterly follow-up in the first year, then every 6 months. 97 of 98 gastroenterologists/colorectal surgeons in RI and 11 in MA agreed to refer patients. Practice billing data were queried and chart reviews were conducted to capture missed referrals. IRB approval was obtained. Results: The mean time from diagnosis to enrollment was approximately 66 days in 2008 and 64 days in 2009. Abdominal pain and fatigue were the most common symptoms reported by both adult and pediatric patients with CD at presentation and year 1 (table 1). Weight loss and decreased appetite were common presenting symptoms in the pediatric population (#3, and #4 respectively), whereas they were not common in the adult CD population. As one would expect, loose/watery stools, urgency, increased frequency of bowel movements and bleeding were the most common symptoms reported by patients with UC at enrollment (Table 2). Conclusion: This prospective description of presenting symptoms in IBD may facilitate earlier evaluation and diagnosis. Fatigue was a common symptom at presentation for both CD and UC/IC but more frequently reported with CD. A large proportion of patients report persistent symptoms at 1 year from diagnosis. Funding: CCFA/CDC 5U01DP000340-03 and NIH 1R21DK078555-02.Table: [1174] OSCCAR: Top 10 Symptoms in Patients with Crohn's Disease.Table: [1174] OSCCAR: Top 10 symptoms in patients with ulcerative colitis and indeterminant colitis

Background: Clinical outcomes and factors predictive of favorable response after 5-aminosalicylates or sulfasalazine (5-ASA/sulfasalazine) treatment alone have not been well established in the treatment of mild to moderate ulcerative colitis (UC) in Asian populations.Methods: A total 256 UC patients, treated with 5-ASA/sulfasalazine as a maintenance therapy at the outpatient clinic of the Severance Hospital between January 2000 and December 2008, were analyzed retrospectively.We sought to investigate clinical relapse rates and to determine independent predictors for relapse.Results: Of the 256 patients, 127 patients (49.6%; 71 men and 56 women) had a disease relapse during the median follow-up periods of 50 months.The cumulative relapse rate was 21.5% after 1 year, 36.5% after 2 years, 46.9% after 3 years, and 59.8% after 5 years.On multivariate analysis, left-sided or extensive colitis at diagnosis (hazard ratio, 1.46; 95% CI, 1.01-2.10;P ¼ 0.04) and initial hemoglobin level < 10.5 g/dL (hazard ratio, 0.43; 95% CI, 0.22-0.81;P ¼ 0.01) were found to be independent factors for clinical relapse.Conclusions: Our study showed that both disease extent at diagnosis and anemia were major predictive factors for clinical relapse after 5-ASA/sulfasalazine therapy for Korean patients with mild to moderate UC.These findings have clinical implications for identifying patients at a high risk of relapse and offering appropriate maintenance therapy.

PURPOSE: OSCCAR, a novel, prospective, population-based inception cohort of patients with inflammatory bowel disease (IBD), was conceived to determine incidence, characterize the natural history and analyze factors that influence disease outcomes.METHODS: Residents of Rhode Island (RI) with newly diagnosed Crohn's disease (CD), ulcerative colitis (UC), or indeterminate colitis (IC) were eligible for enrollment beginning January 1, 2008.Diagnosis of IBD was confirmed using criteria from the NIDDK IBD Genetics Consortium.Individuals diagnosed before January 2008, unwilling to provide consent, and those imprisoned or pregnant at diagnosis were excluded.Research assistants collected demographic data, medical history and disease related information, quality of life and disease activity questionnaires, blood, urine and stool samples, with quarterly follow-up in the first year, then every 6 months.Ninety-seven of 98 gastroenterologists/colorectal surgeons in RI and 11 in MA agreed to refer patients.Practice billing data were queried and chart reviews were conducted to capture missed referrals.Billing data has been reviewed for all but 11 physicians.RESULTS: 237 newly diagnosed CD patients and 274 newly diagnosed UC/IC patients were identified between January 1, 2008 and December 31, 2009.The age distribution for CD was bimodal (graph 1) in contrast to that of UC/IC (graph 2).Unadjusted annual incidence rates for 2008 and 2009 were calculated using the population of RI from the 2004 census as the denominator (1,080,632): IBD 21-27, CD 10.4-11.6,UC 9.3-14.3and IC 0.8-1.1 per 100,000 cases.103 of the 237 CD patients and 77 of the 274 UC/IC patients enrolled in OSCCAR.Demographic information (sex, race, ethnicity, smoking status and NSAID use) was collected at diagnosis and is presented in table 1. CONCLUSION: A systematic methodology has allowed us to establish an IBD registry in Rhode Island.Preliminary data suggests an incidence rate of IBD higher than previously reported in the US.

Purpose: OSCCAR, a novel, prospective, population-based inception cohort of patients with inflammatory bowel disease (IBD), was conceived to determine incidence, better understand the natural history and factors that influence disease outcomes. Methods: Residents of Rhode Island with newly diagnosed Crohn's disease (CD), ulcerative colitis (UC), or indeterminate colitis (IC) were eligible for enrollment beginning January 1, 2008. Diagnosis of IBD was confirmed using criteria from the NIDDK IBD Genetics Consortium. Individuals diagnosed before January 2008, unwilling to provide consent, and those imprisoned or pregnant at diagnosis were excluded. Research assistants collected demographic data, medical history and disease related information, quality of life and disease activity questionnaires, blood, urine and stool samples, with quarterly follow-up in the first year, then every 6 months. 97 of 98 gastroenterologists/colorectal surgeons in RI and 11 in MA agreed to refer patients. Practice billing data were queried and chart reviews were conducted to capture missed referrals. Billing data has been reviewed for all but 11 physicians. IRB approval was obtained. Results: 237 newly diagnosed CD patients and 274 newly diagnosed UC/IC patients were identified between January 1, 2008 and December 31, 2009. The age distribution for CD was bimodal (graph 1) in contrast to that of UC (graph 2). Unadjusted incidence rates for 2008 and 2009 were calculated: IBD 21-27, CD 10.4-11.6, UC 9.3-14.3 and IC 0.8-1.1 per 100,000 cases. 103 of the 237 CD patients and 77 of the 274 UC/IC patients enrolled in OSCCAR. Demographic information (sex, race, ethnicity, smoking status and NSAID use) is presented in table 1. Conclusion: Preliminary data from RI suggests an incidence rate of IBD higher than previously reported in the US. Funding:CCFA/CDC 5U01DP000340-03 and NIH 1R21DK078555-02. Disclosures: Dr Samir A. Shah (The Rhode Island Hospital/Lifespan Principal Investigator and co-PI with Dr Sands in this study: OSCCAR) is on the speaker's bureau for the following companies involved in making medicines used for the treatment of IBD: Abbott, Prometheus, Warner-Chilcott (formerly Proctor & Gamble for the drug Asacol), and UCB. He and his group are/have been involved in registries and/or clinical studies with Centocor and Elan Pharmaceuticals. Dr. Bruce Sands (the MSSM Principal Investigator in this study) receives financial compensation as a consultant and lecturer to several companies which either develop or assess medicines used for the treatment of inflammatory bowel disease (IBD). These companies include BiogenIDEC, Millennium Pharmaceuticals, Proctor & Gamble Pharmaceuticals, Abbott Immunology, Amgen, CommonHealth, Prometheus Laboratories, Axcan Pharma, VMS, Centocor, Elan Pharmaceuticals, Astellas, Chandler Chico Agency, Strategic Consultants Inc., and Cequent Pharmaceuticals (of which he owns stock options). Dr. Neal LeLeiko receives research support as a consultant to several companies which either develop or assess medicines used for the treatment of inflammatory bowel disease (IBD). These companies include Centocor and Astra Zeneca.FigureTable: Baseline demographics of enrolled patients

Crohn’s disease (CD) Crohn’s disease (CD) Crohn’s disease (CD) Crohn’s disease (CD) Crohn’s disease (CD) and ulcerative colitis (UC) are chronic diseases characterized by unpredictable periods of disease activity and quiescence. Some patients suffer from almost continuous symptoms, others, only rare flares of disease activity. In addition to affecting the daily lives of patients, these diseases can dramatically alter family functioning and the patient’s opportunity for becoming a productive adult. As difficult as it may be to manage adults with the disease, the problem of managing childhood disease is made more challenging by children’s growth, their emotional and social development, and the knowledge that even after 30 years of complications of the disease and therapies, pediatric patients may just be entering the prime of their productive years. The difficult task of eventually transitioning the adolescent to adult health care providers presents additional challenges. Current management practices are based on the use of old and new medications neither rigorously tested nor approved for use in children. In an effort to better define the contemporary natural history of IBD in children and augment current management practices, the Pediatric Inflammatory Bowel Disease Research Registry was established in 2002. Initially a collaboration of 21 centers in the US and Canada, this registry has produced several important advances in our understanding of IBD in children. Much of that research is reported in this review. The focus of this paper is to review current advances in pediatric IBD and to emphasize the need for more prospective research.