Spanish National Registry of Celiac Disease

Cilleruelo, María Luz; Román‐Riechmann, Enriqueta; Sánchez-Valverde, F.; Donat, Ester; Manuel-Ramos, José; Martín-Orte, Emilio; López, Maria-Jose; García-Novo, Dolores; García, Salvador; Pavón, Pilar Goméz; Martín, Manuel; Ortigosa, Luís; Barrio, Josefa; Gutiérrez, Carolina; Espín, Beatriz; Castillejo, Gemma; Quintana, Luis Peña; Hualde, Idoia; Sebastián, M; Calvo, Carmen; Fernández, Sonia Fernández; Manueles, Julio De; Armas, H; Urruzuno-Tellerias, Pedro; Juste, Mercedes; Bousoño, Carlos; Ribes-Koninckx, Carmen

doi:10.1097/mpg.0000000000000446

Cited by 35 publications

(21 citation statements)

References 32 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Similar low frequencies of DQ8 have been reported in children with CD from other Spanish regions (22)(23)(24)(25). In addition, the frequencies observed in our Spanish controls differ from those reported in the North of Europe and are slightly lower for DQ2.5.…”

Section: Discussionsupporting

confidence: 69%

HLA-DQ distribution and risk assessment of celiac disease in a Spanish center

Martínez-Ojinaga¹,

Molina²,

Polanco³

et al. 2018

Rev Esp Enferm Dig

View full text Add to dashboard Cite

show abstract

Section: Discussionsupporting

confidence: 69%

HLA-DQ distribution and risk assessment of celiac disease in a Spanish center

Martínez-Ojinaga¹,

Molina²,

Polanco³

et al. 2018

Rev Esp Enferm Dig

View full text Add to dashboard Cite

show abstract

“…In the present study a peak value at 9.9 years was observed (data not shown), one of the highest reported internationally. On the contrary, other studies have reported that the age at diagnosis has not shifted upwards, instead remaining at the same level as in the pre-epidemic and epidemic periods in Sweden [ 23 , 24 ]. Both genetic background and different diet practice among those populations could contribute to this discrepancy.…”

Section: Discussionmentioning

confidence: 89%

“…As age increased, the gap in cumulative incidence between the epidemic cohort and the pre-epidemic and post-epidemic cohorts became wider. The cumulative incidence in a Spanish cohort of patients with CD and mean age at diagnosis of 2.3 years, recorded in their national register between 2006−2007 was almost 7 cases/1000 births [ 24 ]. Our results, 13.8 cases/1000 births at 18 years-of-age, are presumably the highest cumulative incidence rates ever reported [ 24 , 31 , 32 ].…”

Section: Discussionmentioning

confidence: 99%

“…The cumulative incidence in a Spanish cohort of patients with CD and mean age at diagnosis of 2.3 years, recorded in their national register between 2006−2007 was almost 7 cases/1000 births [ 24 ]. Our results, 13.8 cases/1000 births at 18 years-of-age, are presumably the highest cumulative incidence rates ever reported [ 24 , 31 , 32 ]. Even so, it is well-known that CD patients detected by their clinical picture represent approximately 1/3 of all CD cases in the population [ 12 ].…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Unusually High Incidence of Paediatric Coeliac Disease in Sweden during the Period 1973 – 2013

et al. 2015

View full text Add to dashboard Cite

ObjectiveThe prevalence of coeliac disease in Sweden during the “epidemic period” (1984−1996) was one of the highest in the world. The aim of this study was to assess the coeliac disease incidence in our region over the 41-year period, and how diagnostic activity and diagnostic accuracy were affected by the introduction of antibody testing. We also looked into how patients with mild enteropathy were evaluated.MethodsIn the county of Östergötland in Sweden, 2790 paediatric patients were investigated for suspected coeliac disease between 1973 and 2013. Notes were scrutinised for data on sex, age, histopathological reports and final diagnosis. For comparative purposes this period was divided into three sub-periods (1973−1983, 1984−1996 and 1997−2013) named pre-epidemic, epidemic and post-epidemic.ResultsCoeliac disease diagnosis was received by 1,030 patients. The peak incidence rate, 301 cases/100,000 in 1994 for the age group 0−1.9 years is the highest figure ever reported. The other age groups, 2−4.9, 5−14.9, and 15−17.9 years, also had high incidence rates. After the 1984−1996 “epidemic period” the incidence decreased for the youngest group but continued to increase for the other groups. The cumulative incidence at 18 years-of-age for children born during the epidemic reached 14 cases/1000 births, the highest figure hitherto reported. Diagnostic activity differed significantly between the three sub-periods (p<0.001) increasing gradually from 1984 and reaching a peak value of 0.87 in 2012. Cases of mild enteropathy were more frequently regarded as non-coeliac disease cases, decreasing significantly in the “post-epidemic” period (p<0.001).ConclusionsThe incidence rate and cumulative incidence of coeliac disease were possibly the highest ever reported. Changes in diagnostic activity and accuracy could not be attributed to the introduction of new antibody tests, possibly because of other changes e.g. variations in the symptoms at presentation and improved knowledge of the disease among parents and health professionals.

show abstract

“…[3–6] Most studies of the epidemiology of CD were conducted in Europe, with incidence estimated between 2 and 54 cases per 100,000 patient-years (PY). [7–10]…”

Section: Introductionmentioning

confidence: 99%

Validation of an algorithm to identify children with biopsy-proven celiac disease from within health administrative data: An assessment of health services utilization patterns in Ontario, Canada

et al. 2017

View full text Add to dashboard Cite

ImportanceCeliac disease (CD) is a common pediatric illness, and awareness of gluten-related disorders including CD is growing. Health administrative data represents a unique opportunity to conduct population-based surveillance of this chronic condition and assess the impact of caring for children with CD on the health system.ObjectiveThe objective of the study was to validate an algorithm based on health administrative data diagnostic codes to accurately identify children with biopsy-proven CD. We also evaluated trends over time in the use of health services related to CD by children in Ontario, Canada.Study design and settingWe conducted a retrospective cohort study and validation study of population-based health administrative data in Ontario, Canada. All cases of biopsy-proven CD diagnosed 2005–2011 in Ottawa were identified through chart review from a large pediatric health care center, and linked to the Ontario health administrative data to serve as positive reference standard. All other children living within Ottawa served as the negative reference standard. Case-identifying algorithms based on outpatient physician visits with associated ICD-9 code for CD plus endoscopy billing code were constructed and tested. Sensitivity, specificity, PPV and NPV were tested for each algorithm (with 95% CI). Poisson regression, adjusting for sex and age at diagnosis, was used to explore the trend in outpatient visits associated with a CD diagnostic code from 1995–2011.ResultsThe best algorithm to identify CD consisted of an endoscopy billing claim follow by 1 or more adult or pediatric gastroenterologist encounters after the endoscopic procedure. The sensitivity, specificity, PPV, and NPV for the algorithm were: 70.4% (95% CI 61.1–78.4%), >99.9% (95% CI >99.9->99.9%), 53.3% (95% CI 45.1–61.4%) and >99.9% (95% CI >99.9->99.9%) respectively. It identified 1289 suspected CD cases from Ontario-wide administrative data. There was a 9% annual increase in the use of this combination of CD-associated diagnostic codes in physician billing data (RR 1.09, 95% CI 1.07–1.10, P<0.001).ConclusionsWith its current structure and variables Ontario health administrative data is not suitable in identifying incident pediatric CD cases. The tested algorithms suffer from poor sensitivity and/or poor PPV, which increase the risk of case misclassification that could lead to biased estimation of CD incidence rate. This study reinforced the importance of validating the codes used to identify cohorts or outcomes when conducting research using health administrative data.

show abstract

Spanish National Registry of Celiac Disease

Abstract: In Spain, the most frequent clinical presentation of CD is the classical form, mainly diagnosed during the first 2 years of life. The observed incidence of CD in Spanish children is much higher than the present CD incidence rates observed in other European countries.

Cited by 35 publications

References 32 publications

HLA-DQ distribution and risk assessment of celiac disease in a Spanish center

HLA-DQ distribution and risk assessment of celiac disease in a Spanish center

Unusually High Incidence of Paediatric Coeliac Disease in Sweden during the Period 1973 – 2013

Validation of an algorithm to identify children with biopsy-proven celiac disease from within health administrative data: An assessment of health services utilization patterns in Ontario, Canada

Contact Info

Product

Resources

About