The use of US health insurance data for surveillance of rare disorders: hereditary hemorrhagic telangiectasia

Grosse, Scott D.; Boulet, Sheree L.; Grant, Althea M.; Hulihan, Mary M.; Faughnan, Marie E.

doi:10.1038/gim.2013.66

Cited by 58 publications

(52 citation statements)

References 26 publications

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“…Certain areas such as the Dutch Antilles and the Ain region of France have shown particularly high prevalence of the disease. Elsewhere, most studies indicate a prevalence between 1 and 1.6/10 000 (or between 1/6000 and 1/10 000) and our study estimate falls within this range, although data from individuals with health insurance in the USA provide estimates as low as 1/33 000 20. Our findings with respect to age are consistent with previous work, with the prevalence of HHT being higher in older age groups, suggesting that the disease has an age-related penetrance17 or alternatively that the likelihood of diagnosis is related to longevity.…”

Section: Discussionsupporting

confidence: 44%

“…One study from the Dutch Antilles showed a 33% increased prevalence ratio of a ‘definite’ diagnosis of HHT in women compared with men (using the Curacao criteria),15 and a recent US paper found a female:male ratio of 1.54, with HHT being diagnosed more commonly in women 20. Other studies have reported a more balanced distribution between sexes 14 17.…”

Section: Discussionmentioning

confidence: 99%

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The UK prevalence of hereditary haemorrhagic telangiectasia and its association with sex, socioeconomic status and region of residence: a population-based study

Donaldson

McKeever

Hall

et al. 2013

Thorax

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The UK prevalence of hereditary haemorrhagic telangiectasia and its association with sex, socioeconomic status and region of residence: a population-based study. Thorax, 69 (2 A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription. and RH contributed to the study design and interpretation of findings. All authors were involved in revising and approving the manuscript before submission. Word Count 2,963 KeywordsHereditary Haemorrhagic Telangiectasia, Epidemiology, Prevalence, Sex, Socioeconomic status What is the key question?What is the current prevalence of Hereditary Haemorrhagic Telangiectasia (HHT) in the UK and how does it vary with respect to age, sex, socioeconomic status and geographical location? What is the bottom line?Using a representative UK general practice database we estimate the prevalence of HHT to be at least 1 per 9,500 which is more common than previously documented in the UK, though still likely to represent an underestimate of the true prevalence. Why read on?We identify particular under-recognition in the diagnosis of HHT in males and those from less affluent socioeconomic groups with a significant variation in diagnostic rates between different geographical regions of the UK.3 ABSTRACT Background

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Section: Discussionsupporting

confidence: 44%

Section: Discussionmentioning

confidence: 99%

The UK prevalence of hereditary haemorrhagic telangiectasia and its association with sex, socioeconomic status and region of residence: a population-based study

Donaldson

McKeever

Hall

et al. 2013

Thorax

View full text Add to dashboard Cite

show abstract

“…15 Interestingly, despite the fact that HHT is an autosomal dominantly inherited disorder, its clinical prevalence is higher in women with studies demonstrating a male:female ratio of 1:1.33 to 1:1.54. 14,16,17 Proposed explanations for this disparity include (1) increased use of healthcare resources by women resulting in higher detection rates, (2) epigenetic and environmental factors, and (3) hormonal factors.…”

Section: Epidemiologymentioning

confidence: 99%

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Brinjikji

Iyer

Sorenson

et al. 2015

Stroke

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“…The data were derived from the MarketScan Commercial Claims and Encounters Database (CCE) of Truven Health Analytics, a large U.S.-based claims database (9)(10)(11). It contains data from 2002 through 2013 on ;30 million patients ,65 years from .150 large employers geographically distributed throughout the U.S. that cover employees and their dependent family members.…”

Section: Methodsmentioning

confidence: 99%

Prevalence of Diabetes and Diabetic Nephropathy in a Large U.S. Commercially Insured Pediatric Population, 2002–2013

Jick

Breitenstein

et al. 2015

Diabetes Care

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OBJECTIVE To estimate the prevalence of diabetes and diabetic nephropathy in a large population of U.S. commercially insured patients aged <18 years from 2002 to 2013. RESEARCH DESIGN AND METHODS Using the U.S. MarketScan Commercial Claims and Encounters Database, we identified 96,171 pediatric patients with diabetes and 3,161 pediatric patients with diabetic nephropathy during 2002–2013. We estimated prevalence of pediatric diabetes overall, by diabetes type, age, and sex, and prevalence of pediatric diabetic nephropathy overall, by age, sex, and diabetes type. RESULTS The annual prevalence of diabetes in the whole pediatric population increased from 1.86 to 2.82 per 1,000 during 2002–2013: 1.48 to 2.32 per 1,000 for type 1 diabetes and 0.38 to 0.67 per 1,000 for type 2 diabetes in 2002–2006 and then 0.56 to 0.49 per 1,000 thereafter. The annual prevalence of diabetic nephropathy in pediatric patients with diabetes increased from 1.16 to 3.44% for all cases and 0.83 to 2.32% for probable cases only in 2002–2013. Prevalence of diabetes and diabetic nephropathy was highest in patients aged 12 to <18 years. While prevalence of type 1 diabetes was higher in male than in female youth, prevalence of type 2 diabetes and diabetic nephropathy was higher in female than in male youth. There was no difference in prevalence of diabetic nephropathy by diabetes type. CONCLUSIONS The prevalence of diabetes and diabetic nephropathy increased in the U.S. MarketScan commercially insured pediatric population from 2002 to 2013. The prevalence of diabetes and diabetic nephropathy markedly increased starting at age 12 years.

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The use of US health insurance data for surveillance of rare disorders: hereditary hemorrhagic telangiectasia

Cited by 58 publications

References 26 publications

The UK prevalence of hereditary haemorrhagic telangiectasia and its association with sex, socioeconomic status and region of residence: a population-based study

The UK prevalence of hereditary haemorrhagic telangiectasia and its association with sex, socioeconomic status and region of residence: a population-based study

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Prevalence of Diabetes and Diabetic Nephropathy in a Large U.S. Commercially Insured Pediatric Population, 2002–2013

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