Ocean State Crohn's and Colitis Area Registry (OSCCAR)

Sands, B E; Shah, Samik; LeLeiko, Neal S.; Lidofsky, Sheldon; Bright, Renee; Grabert, Stacey; Law, Meaghan; Moniz, Heather; Bancroft, Barbara; Kalasapudi, Bharati; Cole, Elisabeth B.; Merrick, Marjorie; Flowers, Nicole T.; Patel, M. N.; Aw, Harris

doi:10.1093/ibd/17.supplement1.s8

Cited by 10 publications

(14 citation statements)

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“…It is also often cited that a large percentage of Olmsted County inhabitants are also working in health care and are highly educated which may make natural history findings less generalizable to the larger US population [42]. The Ocean State Crohn’s and Colitis Registry (OSCCAR) is another registry of a multicenter population that recruited incident cases of IBD in Rhode Island up to 6 months from initial diagnosis [43]. OSCCAR follows patients prospectively at predetermined intervals and has collected extremely valuable data on health outcomes, quality of life, and disease activity while having the added benefit of biological sample collection.…”

Section: Discussionmentioning

confidence: 99%

Development of an Inflammatory Bowel Disease Research Registry Derived from Observational Electronic Health Record Data for Comprehensive Clinical Phenotyping

et al. 2016

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Background Inflammatory bowel disease (IBD) is a heterogeneous collection of chronic inflammatory disorders of the digestive tract. Clinical, genetic, and pathological heterogeneity makes it increasingly difficult to translate efficacy studies into real-world practice. Our objective was to develop a comprehensive natural history registry derived from multi-year observational data to facilitate effectiveness and clinical phenotypic research in IBD. Methods A longitudinal, consented registry with prospectively collected data was developed at UPMC. All adult IBD patients receiving care at the tertiary care center of UPMC are eligible for enrollment. Detailed data in the electronic health record are accessible for registry research purposes. Data are exported directly from the electronic health record and temporally organized for research. Results To date, there are over 2565 patients participating in the IBD research registry. All patients have demographic data, clinical disease characteristics, and disease course data including healthcare utilization, laboratory values, health-related questionnaires quantifying disease activity and quality of life, and analytical information on treatment, temporally organized for 6 years (2009–2015). The data have resulted in a detailed definition of clinical phenotypes suitable for association studies with parameters of disease outcomes and treatment response. We have established the infrastructure required to examine the effectiveness of treatment and disease course in the real-world setting of IBD. Conclusions The IBD research registry offers a unique opportunity to investigate clinical research questions regarding the natural course of the disease, phenotype association studies, effectiveness of treatment, and quality of care research.

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Section: Discussionmentioning

confidence: 99%

Development of an Inflammatory Bowel Disease Research Registry Derived from Observational Electronic Health Record Data for Comprehensive Clinical Phenotyping

et al. 2016

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“…The Ocean State Crohn’s and Colitis Area Registry (OSCCAR) is a community-based inception cohort that consists of 408 adult and pediatric patients diagnosed with inflammatory bowel disease between 2008 and 2012 in the state of Rhode Island(14). Patients were enrolled within one year of diagnosis of IBD, and had serum collected and stored at −80°C in BD P100 (BD Diagnostics) sample tubes at the time of enrollment, as well as yearly thereafter.…”

Section: Methodsmentioning

confidence: 99%

Serum Proteome Profiles in Stricturing Crohnʼs Disease

Townsend

Qi-bin

Shapiro

et al. 2015

Inflammatory Bowel Diseases

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Background Crohn’s disease (CD) is a form of inflammatory bowel disease (IBD) with different described behaviors, including stricture. At present, there are no laboratory studies that can differentiate stricturing CD from other phenotypes of IBD. We performed a pilot study to examine differences in the proteome among patients with stricturing Crohn’s disease, non-stricturing Crohn’s disease, and ulcerative colitis (UC). Methods Serum samples were selected from the Ocean State Crohn’s and Colitis Area Registry (OSCCAR), an established cohort of patients with IBD. Crohn’s disease patients with surgically-resected stricture were matched with similar patients with Crohn’s disease without known stricture, and with UC. Serum samples from each patient were digested and analyzed using liquid chromatography-mass spectrometry to characterize the proteome. Statistical analyses were performed to identify peptides and proteins that can differentiate CD with stricture. Results Samples from 9 patients in each group (27 total patients) were analyzed. Baseline demographic characteristics were similar among the three groups. We quantified 7668 peptides and 897 proteins for analysis. ROC analysis identified a subset of peptides with an area under the curve greater than 0.9, indicating greater separation potential. Partial least squares discriminant analysis was able to distinguish among the three groups with up to 70% accuracy by peptides, and up to 80% accuracy by proteins. We identified the significantly different proteins and peptides, and determined their function based on previously published literature. Conclusions The serum of patients with stricturing CD, non-stricturing CD, and UC are distinguishable via proteomic analysis. Some of the proteins that differentiate the stricturing phenotype have been implicated in complement activation, fibrinolytic pathways, and lymphocyte adhesion.

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“…Budući da podatci svjetske literature govore u prilog trendu porasta incidencije kroničnih upalnih bolesti crijeva u djece, prvenstveno na račun Crohnove bolesti, ne čudi činjenica da je najčešće proučavan parametar baš incidencija bolesti, (10,11,16,17,21,22,(37)(38)(39). Najviši porast ukupne incidencije zabilježen je u Španjolskoj -u posljednjih 30-ak godina čak šesnaesterostruk (21,39).…”

Section: Incidencijaunclassified

Uloga nacionalnog registra u zbrinjavanju djece oboljele od kroničnih upalnih bolesti crijeva

Ivković

Hojsak²,

Trbojević³

et al. 2015

Paediatr Croat

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Kroničnim upalnim bolestima crijeva u djece, za razliku od odraslih, svojstven je teži tijek i prošireniji oblik bolesti te negativan utjecaj na rast i razvoj. U posljednjih nekoliko desetljeća zamijećen je trend porasta incidencije kroničnih upalnih bolesti crijeva UVODKronične upalne bolesti crijeva zahvaćaju gastrointestinalni sustav, obilježene su relapsirajućim tijekom, a uključuju Crohnovu bolest, ulcerozni i nedeterminirani kolitis. Bolest koja počinje u dječjoj dobi u mnogočemu se razlikuje od one u odrasloj, ne samo time što je agresivnija pa zahvaća veći dio probavnog sustava u usporedbi s odraslim bolesnicima (1, 2, 3), nego i tijekom vremena mijenja fenotip iz blažeg u teži oblik (1). Samim tim liječenje djece se bitno razlikuje od liječenja odraslih bolesnika.Najznačajnija osobitost upalnih bolesti crijeva u dječjoj dobi je zaostatak u rastu i spolnom razvoju koji negativno utječe na psihosocijalni razvoj djece, a time i na kakvoću njihovih života (4).Zbog velike varijabilnosti i brojnih specifi čnosti same dječje populacije i širokog spektra obilježja bolesti, jedini način za dugoročno sustavno praćenje oboljele djece je putem registra oboljelih, kojima je osnovna zadaća sustavno i kontinuirano prikupljanje i pohranjivanje podataka o oboljelima, koji služe kao osnova za planiranje i provedbu daljnjih istraživanja, ali i kliničko praćenje bolesnika.Cilj nam je stoga ovim radom u početnom dijelu istaknuti osobitosti kroničnih upalnih bolesti crijeva u djece, a potom prikazati obilježja, uloge i ciljeve nacionalnih registara za djecu oboljelu od kroničnih upalnih bolesti crijeva, te posebno istaknuti kliničku, ali i znanstvenu važnost utemeljenja takvog registra u našoj državi. OSOBITOSTI KRONIČNIH UPALNIH BOLESTI CRIJEVA U DJECEDjeca oboljela od kroničnih upalnih bolesti crijeva najčešće imaju prošireniji i teži oblik bolesti te drukčiji klinički tijek u odnosu na odrasle (5). Budući da se otprilike 1/4 -1/3 svih bolesnika dijagnosticira u dječjoj i adolescentnoj dobi (6), upalne bolesti crijeva u djece veliki su problem na koji se pravodobnom i adekvatnom intervencijom može znatno utjecati. Iako se najčešće dijagnosticiraju u kasnom djetinjstvu i adolescenciji, mogu se pojaviti u bilo kojoj pedijatrijskoj dobi, uključujući i dojenačku (7). Tijekom posljednjih pedesetak godina u cijelom je svijetu zamijećen porast inci-

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Ocean State Crohn's and Colitis Area Registry (OSCCAR)

Cited by 10 publications

References 0 publications

Development of an Inflammatory Bowel Disease Research Registry Derived from Observational Electronic Health Record Data for Comprehensive Clinical Phenotyping

Development of an Inflammatory Bowel Disease Research Registry Derived from Observational Electronic Health Record Data for Comprehensive Clinical Phenotyping

Serum Proteome Profiles in Stricturing Crohnʼs Disease

Uloga nacionalnog registra u zbrinjavanju djece oboljele od kroničnih upalnih bolesti crijeva

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