Registries as useful tools in characterization of allergic manifestations

Járes, Edgardo; Badellino, Héctor; Ensina, Luis Felipe

doi:10.1097/aci.0000000000000265

Cited by 7 publications

(4 citation statements)

References 64 publications

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“…Registries usefulness is well recognized in allergic diseases [31], and the present registry represents a valid instrument from which to obtain a sufficient sample size for epidemiological studies and/or clinical research planning, including feasibility and potential enrollment. It can also provide invaluable data for adapting guidelines to local populations, as well as diagnosis approach and cost-effective interventions in the context of organizational efforts to improve patient care.…”

Section: Discussionmentioning

confidence: 99%

Why a registry of Chronic Urticaria (CUR) is needed

Gómez¹,

Járes

Canonica

et al. 2017

World Allergy Organization Journal

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Chronic urticaria (CU) has a major effect on patients’ quality of life. While there have been progressive advances regarding its pathogenesis and treatment, much remains to be done.Registries of other chronic non-communicable diseases have shown many benefits, such as additional basic knowledge and management approaches to diabetes mellitus. Standards of care as well as diagnostic approaches can be elaborated and compared from different sites, using validated instruments. Registries in allergic diseases are also becoming well recognized, and the first registry on CU, accessible from SLaai’s webpage, includes parameters for identification, evaluation and management. In our vision, informatics strategies have the potential to improve care for chronic illnesses such as CU. The registry represents a valid instrument from which to obtain a sufficient sample size for epidemiological studies and/or clinical research planning, including feasibility and potential enrollment. It can also provide invaluable data for adapting guidelines to local populations, as well as diagnostic approaches and cost-effective interventions in the context of organizational efforts to improve patient care.Electronic supplementary materialThe online version of this article (doi:10.1186/s40413-017-0147-2) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Why a registry of Chronic Urticaria (CUR) is needed

Gómez¹,

Járes

Canonica

et al. 2017

World Allergy Organization Journal

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“…Although most disorders in the NPR have a predictive value of 85%-95%, 10,11 the validity of register data on AR varies between different studies. [12][13][14][15] Using the Swedish personal identity numbers, questionnaire data from a large, Swedish birth cohort could be compared with SPDR and NPR data over time. This type of comparison is of special interest, as it is currently unclear whether register data on AR are able to supplement or replace questionnaire data.…”

Section: Introductionmentioning

confidence: 99%

“…Although most disorders in the NPR have a predictive value of 85%–95%, 10,11 the validity of register data on AR varies between different studies 12–15 . Using the Swedish personal identity numbers, questionnaire data from a large, Swedish birth cohort could be compared with SPDR and NPR data over time.…”

Section: Introductionmentioning

confidence: 99%

Low agreement between Swedish national registers and parental questionnaires on allergic rhinitis

Vasileiadou,

Wennergren,

Celind

et al. 2023

Pediatric Allergy Immunology

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BackgroundAllergic rhinitis (AR) has been well documented using questionnaire‐based studies. Here, we examine the agreement between parental‐reported data during childhood with the emphasis on 12‐year‐olds and data from two national Swedish registers to determine whether register data on AR can supplement or replace questionnaire data.MethodsData were collected from a prospective, longitudinal cohort study of children born in western Sweden in 2003. Parental questionnaires were filled out at 6 months and one, four, eight, and 12 years of age. A total of 3634 children were linked to the Swedish Prescribed Drug Register (SPDR) and the National Patient Register (NPR) using personal identity numbers. The agreement between the register and questionnaire data was estimated using Cohen's kappa with 95% confidence intervals.ResultsAccording to the SPDR, 9.9% (n = 360/3634) of the children were dispensed specific AR medication at 11–13 years of age compared with the 12 years questionnaire where 23% reported AR medication use during the last 12 months. The overall agreement between questionnaire and SPDR data on AR medication was slight (kappa 0.05). At 11–12 years, 1.8% (n = 65/3634) of the children received an outpatient AR diagnosis in the NPR, while 10% reported doctor‐diagnosed AR in the questionnaire. The overall agreement between questionnaire and NPR data on AR diagnosis was slight (kappa 0.16).ConclusionsThere was poor agreement between questionnaire and register data regarding AR and dispensed medication. Explanations could include over‐the‐counter drugs and diagnosis in primary care, which are not included in the registers.

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“…Registries provide information on several real-life procedures such as diagnosis and management approach or validating outcomes 1 . The quality of evidence a registry could provide has been properly discussed by Dreyer and Garner in the Journal of the American Medical Association (JAMA), reporting on the Agency for Healthcare Research and Quality definition of a registry as “ an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposure, and that serves a predetermined scientific, clinical or policy purpose(s) ” 2 …”

Section: Introductionmentioning

confidence: 99%

Latin American chronic urticaria registry (CUR) contribution to the understanding and knowledge of the disease in the region

Gómez

Járes

Borges

et al. 2019

World Allergy Organization Journal

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Chronic urticaria (CU) has a widespread spectrum on causal or exacerbating factors, clinical manifestations, therapeutic response and quality of life affectation. Registries are useful tools in several real-life diagnosis and management approach. We aimed to evaluate the characteristics of CU patients living in Latin America through an original cross-sectional registry with data entered by regional allergologists. Results Three hundred patients were included, being 72% female, with median age of 36 years (1–85) and 20 months of CU median evolution time. The cause of CU was reported as unknown in 72% of them. Thirty-nine percent of suspected cases presented positive serology for Mycoplasma, positive autologous serum skin test (ASST) was reported in 47%, and occasional presence of thyroid or antinuclear autoantibodies and parasites. The impact of pruritus in their quality of life was moderate to severe in 60% of patients, with almost 3 out of four patients having partial or lack of urticaria control with anti-histamines. Conclusions Our registry provides retrospective data on the real-life assistance of a large number of patients from the region. Continuous search for associated conditions and better treatment possibilities are needed, in order to control the significant impact on quality of life and the length of disease.

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Registries as useful tools in characterization of allergic manifestations

Abstract: Registries in allergy enlighten knowledge in areas not covered by classical investigational methods. As the number and importance of registries is growing, its contribution to the knowledge and management of allergic diseases will increase in the near future.

Cited by 7 publications

References 64 publications

Why a registry of Chronic Urticaria (CUR) is needed

Why a registry of Chronic Urticaria (CUR) is needed

Low agreement between Swedish national registers and parental questionnaires on allergic rhinitis

Latin American chronic urticaria registry (CUR) contribution to the understanding and knowledge of the disease in the region

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