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  • Jefferson Adams
    Jefferson Adams

    Danish National Patient Register Validated as an Excellent Source for Celiac Patient Information

      A team of researchers recently set out to validate the celiac disease diagnoses recorded in the Danish National Patient Register. The research team included Stine Dydensborg Sander, Ketil Størdal, Tine Plato Hansen, Anne-Marie Nybo Andersen, Joseph A Mu

    Caption: Image: CC--Nelson L

    Celiac.com 01/19/2017 - A team of researchers recently set out to validate the celiac disease diagnoses recorded in the Danish National Patient Register.

    The research team included Stine Dydensborg, Dydensborg Sander, Ketil Størdal, Tine Plato Hansen, Anne-Marie Nybo Andersen, Joseph A Murray, Søren Thue Lillevang, and Steffen Husby.

    They are variously affiliated with the Hans Christian Andersen Children’s Hospital, Odense University Hospital, Institute of Clinical Research, University of Southern Denmark, Odense Patient Data Explorative Network (OPEN), Odense University Hospital, Odense, Denmark; Mental and Physical Health, Norwegian Institute of Public Health, Oslo, Department of Pediatrics, Ostfold Hospital Trust, Fredrikstad, Norway; Department of Pathology, Hvidovre Hospital, Department of Public Health, University of Copenhagen, Copenhagen, Denmark; Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA; Department of Clinical Immunology, Odense University Hospital, Odense, Denmark.

    To validate the diagnoses, they used information on duodenal biopsies from a national register of pathology reports (the Patobank) and information on celiac disease-specific antibodies and human leukocyte antigen (HLA) genotypes obtained from patient medical records. Their study included all children born from 1995 to 2012 and registered as having celiac disease in the Danish National Patient Register.

    They reviewed all pathology reports on duodenal biopsies in the Patobank, along with medical record information on celiac disease-specific antibodies, such as anti-tissue transglutaminase 2 IgA and IgG, endomysial antibodies IgA, and anti-deamidated gliadin peptide IgG) and HLA genotypes.

    In the Danish National Patient Register, they found 2,247 children with celiac disease. Duodenal biopsies for 1,555 of the children (69%) were registered in the Patobank; 1,127 (50%) had biopsies consistent with celiac disease; i.e., Marsh 2–3.

    The team accessed the medical records of 95% of the children registered in the ­Danish National Patient Register with celiac disease. They found that 1,510 patients, or 67%, had one or more positive antibody-test results; 1,120, or 50% had anti-tissue transglutaminase 2 IgA ten times or more above the upper limit of the normal range and/or positive endomysial antibody results.

    The positive predictive value depended on the criteria used for validation and the types and numbers of registrations included in the analysis. Accordingly, the values ranged from 62% (95% confidence interval: 60%–64%) to 86% (95% confidence interval: 84%–87%).

    These findings indicate that the Danish National Patient Register is a valuable source to identify patients who have been diagnosed with celiac disease. However, they recommend that researchers validate and document diagnoses before using patient data for research purposes.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

  • Related Articles

    Jefferson Adams
    Celiac.com 11/05/2015 - Professional reports on various aspects celiac disease and gluten-free issues can be helpful for numerous people seeking to better understand what the current and future landscape will look like. 
    The latest such report is the EpiCast Report: Celiac Disease – Epidemiology Forecast to 2023. The celiac disease EpiCast Report provides an overview of the risk factors, co-morbidities, and the global and historical trends for celiac disease in the six major markets (6MM) (US, France, Germany, Italy, Spain, and UK).
    In that report, GlobalData epidemiologists forecast that the number of total prevalent cases of celiac disease in the 6MM is expected to grow to 8.08 million cases in 2023 at a rate of 3.92% per year during the forecast period.
    The number of diagnosed prevalent cases in the 6MM is expected to increase by 4.61% over the next decade to 1.11 million cases in 2023.
    According to the literature, GlobalDatas forecast and analysis is based on a thorough literature review and from primary research results, followed by a careful review of selected secondary research studies and validation of study findings with primary research by GlobalData epidemiologists.
    The report stands out primarily because GlobalData epidemiologists maintained a consistent case-finding definition and forecasting methodology for celiac disease throughout the 6MM, which allows for a meaningful comparison of the total and diagnosed prevalent cases of celiac disease in these markets.
    The report further breaks down total prevalent cases of celiac disease by sex, thus providing a detailed analysis of the patient population characteristic of celiac disease. Additionally, GlobalData epidemiologists also provided a realistic trend forecast for the total and diagnosed prevalence of celiac disease based on insights gained through the analysis of historical data.
    Lastly, the report also includes a comprehensive 10-year epidemiological celiac disease forecast broken down by sex and age (0-19 years, 20-29 years, 30-39 years, 40-49 years, 50-59 years, 60-69 years, and =70 years), and a 10-year epidemiological forecast for the diagnosed prevalent cases of celiac disease in the 6MM.
    Source:
    Medgadget.com

    Jefferson Adams
    Celiac.com 01/22/2016 - The number of children with gluten intolerance in one part of Scotland has more than doubled in just five years, according to a new survey.
    The results of the survey, which were presented at a major meeting of children's health experts, indicate that the number of children diagnosed with celiac disease in the Lothian health region rose sharply between 2010 and 2015.
    Between 2010 and 2014, data from the Royal Hospital for Sick Children revealed a total of 168 patients under the age of 16 with celiac disease, with 30 per cent of these diagnosed in 2014, compared to just 12.5 per cent in 2010.
    Statistics show 21 cases in 2010, a number which rises to 34 in 2012 and 49 by 2014.
    Doctors have not yet determined if the rise in celiac cases in Lothian is due to better disease awareness, and more stringent diagnostic techniques. They will undoubtedly be following up to determine the likely cause of the rise in celiac cases.
    Meanwhile, they are urging doctors and clinicians to do more to spot celiac cases early, so as to help patients avoid possibly serious celiac-related complications as they age.
    Source:
    heraldscotland.com

    Jefferson Adams
    New Study Takes a Deep Look at US Celiac Disease Rates Over Time
    Celiac.com 09/26/2016 - Previous studies have indicated an increase in celiac disease rates in the United States, but these studies have been done on narrow populations, and did not produce results that are nationally representative.
    Researchers recently released an new comprehensive report, called, Time Trends in the Prevalence of Celiac Disease and Gluten-Free Diet in the US Population: Results From the National Health and Nutrition Examination Surveys 2009-2014. The research team included Hyun-seok Kim, MD, MPH; Kalpesh G. Patel, MD1; Evan Orosz, DO; Neil Kothari, MD; Michael F. Demyen, MD; Nikolaos Pyrsopoulos, MD, PhD, MBA; and Sushil K. Ahlawat, MD. They are variously affiliated with the Division of Gastroenterology and the Department of Medicine at Rutgers New Jersey Medical School in Newark.
    Using data from the National Health and Nutrition Examination Surveys, a team of researchers recently examined current trends in both celiac disease rates, and gluten-free diet adherence.
    Currently, far more people follow a gluten-free diet than have celiac disease. The numbers of people eating gluten-free food far outpace the levels of celiac disease diagnosis. This may be due to perceptions that the diet is healthier than a standard non-gluten-free diet.
    This research teams recent surveys examine the current trends in the prevalence of celiac disease and adherence to a gluten-free diet, including people without celiac disease, using nationally representative data from the National Health and Nutrition Examination Surveys (NHANESs) 2009-2014.
    The study evaluated 22,278 individuals over the age of 6 who completed surveys and blood tests for celiac disease. The subjects were interviewed directly regarding their prior diagnosis of celiac disease and adherence to a gluten-free diet.

    The researchers found that 106 (0.69%) individuals had a celiac disease diagnosis, and 213 (1.08%) followed a gluten-free diet but didn't have celiac disease. These results correlate to an estimated 1.76 million people with celiac disease, and 2.7 million people who follow a gluten-free diet without a diagnosis of celiac disease in the United States.

    Overall, the researchers found that the prevalence of celiac disease has remained steady (0.70% in 2009-2010, 0.77% in 2011-2012, and 0.58% in 2013-2014), however, those who follow a gluten-free diet but don't have celiac disease have increased over time (0.52% in 2009-2010, 0.99% in 2011-2012, and 1.69% in 2013-2014). The researchers conclude that the two might be related, as the decrease in gluten consumption could contribute to a plateau in those who are being diagnosed with celiac disease.
    Source:
    JAMA Intern Med. Published online September 06, 2016. doi:10.1001/jamainternmed.2016.5254

    Jefferson Adams
    Can Anthropometric Measures and Prevalence Trends Tell Us About Adolescents with Celiac Disease?
    Celiac.com 01/04/2017 - A team of researchers recently set out to investigate the impact of celiac disease diagnosis on anthropometric measures at late adolescence, and to assess trends in the prevalence of diagnosed celiac disease over time.
    The research team included Amit Assa, Yael Frenkel-Nir, Ya'ara Leibovici-Weissman, Dorit Tzur, Arnon Afek, Lior H Katz, Zohar Levi, and Raanan Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Disease, Schneider Children's Medical Center, Petach Tikva, Israel, the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, the Medical Corps of the Israel Defense Forces, Ramat-Gan, Israel, the Institute of Gastroenterology, Rabin Medical Center-Beilinson Campus, Petach Tikva, Israel, and with the Ministry of Health in Jerusalem, Israel.
    Around 17 years of age, most of the Israeli Jewish population undergoes a general health examination, before enlistment in the Defense Forces. Individual medical information, diagnoses, etc., are entered into a structured database. For their population based study, the research team reviewed the enlistment data base for celiac disease cases between the years 1988 and 2015.
    In all, the team reviewed the medical records of 2,001,353 individuals, focusing on body measurements and physical health at the age of 17 years.
    Overall, they found and assessed 10,566 cases of celiac disease (0.53%). Multivariable analysis showed that adolescent boys with celiac disease were leaner (Body Mass Index 21.2±3.7 vs 21.7±3.8, p=0.02), while girls with celiac disease were shorter (161.5±6 cm vs 162.1±6 cm, p=0.017) than the general population.
    The prevalence of diagnosed celiac disease increased from 0.5% to 1.1% in the last 20 years, mainly among females, who saw a rise of 0.64% vs 0.46% for males. Celiac disease rates were far lower in people of lower socioeconomic status, and those of African, Asian and former Soviet Union origin.
    However, the clinical relevance of the small differences suggests that when celiac disease is diagnosed during childhood, final weight and height are not severely impaired.
    The team's cohort supports an observed rise in celiac disease diagnoses in the last couple of decades.
    Source:
    Arch Dis Child doi:10.1136/archdischild-2016-311376

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