An electronic surveillance system for monitoring the hospital presentation of nutritional vitamin D deficiency in children in Scotland

El-fakhri, Nagla; Williams, Craig; K, Cox; McDevitt, Helen; Galloway, Peter; McIntosh, N; Ahmed, SF

doi:10.1515/jpem-2013-0175

Cited by 4 publications

(4 citation statements)

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“…The ScotPSU is shown to have a reliable system with a good response rate and several ScotPSU studies have been completed and some were published 21 22. Patients with CRPS were reported to this study by clinicians from different specialties confirming the ScotPSU's wide reach.…”

Section: Discussionmentioning

confidence: 62%

Complex regional pain syndrome in children: incidence and clinical characteristics

Abu-Arafeh

Abu‐Arafeh

2016

Arch Dis Child

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Section: Discussionmentioning

confidence: 62%

Complex regional pain syndrome in children: incidence and clinical characteristics

Abu-Arafeh

Abu‐Arafeh

2016

Arch Dis Child

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“…Many clinical and scientific networks for rare conditions operate an electronic reporting system to perform surveillance as well as to understand the incidence and prevalence of conditions ( 2 , 3 , 4 , 5 ). The European Registries for Rare Endocrine Conditions (EuRRECa) project was launched in 2018 ( http://eurreb.eu ) and aimed at providing its users with a wide range of registry solutions that would maximise the opportunity for patients, health-care professionals and researchers to participate in registries for rare endocrine conditions.…”

Section: Introductionmentioning

confidence: 99%

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

Ali,

Bryce,

Priego-Zurita

et al. 2023

Endocrine Connections

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Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim of this study was to report the experience of e-REC over the 3.5 years since its launch in 2018. Methods Electronic reporting capturing new encounters of Endo-ERN conditions was performed monthly through a bespoke platform by clinicians registered to participate in e-REC from July 2018 to December 2021. Results The number of centres reporting on e-REC increased to a total of 61 centres from 22 countries. A median of 29 (range 11, 45) paediatric and 32 (14, 51) adult centres had reported cases monthly. A total of 9715 and 4243 new cases were reported in adults (age ≥18 years) and children, respectively. In children, sex development conditions comprised 40% of all reported conditions and transgender cases were most frequently reported, comprising 58% of sex development conditions. The median number of sex development cases reported per centre per month was 0.6 (0, 38). Amongst adults, pituitary conditions comprised 44% of reported conditions and pituitary adenomas (69% of cases) were most commonly reported. The median number of pituitary cases reported per centre per month was 4 (0.4, 33). Conclusions e-REC has gained increasing acceptability over the last 3.5 years for capturing brief information on new encounters of rare conditions and shows wide variations in the rate of presentation of these conditions to centres within a reference network. Significance statement Endocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.

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“…Vitamin D deficiency DCM was reported in the literature in Asian and Black populations. The prevalence of vitamin D deficiency rickets is widely reported to be increasing across Europe1–3; we aim to describe the incidence, demographics and prognosis of vitamin D deficiency DCM in Scotland over the last decade.…”

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confidence: 99%

Vitamin D deficiency cardiomyopathy in Scotland: a retrospective review of the last decade

2020

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ObjectiveTo determine the incidence, demography and prognosis of vitamin D deficiency dilated cardiomyopathy (DCM) in Scotland over the last decade.Study designA retrospective review of cases of vitamin D deficiency DCM presenting to a national paediatric cardiac centre between 1 January 2008 and 1 January 2018. The departmental database and electronic and paper case notes were used to identify patients and extract data.ResultsSix patients were identified (three male), three of whom were Caucasian. Median age at presentation was 206 days (range 2–268.) All six patients had high serum parathyroid hormone levels (median 45 pmol/L, range 27–120 pmol/L), a sensitive marker of total body calcium deprivation secondary to vitamin D deficiency. All patients demonstrated clinical and echocardiographic improvement following high dose vitamin D treatment. No patients required cardiac transplant, and only one patient required extracorporeal life support as a bridge to recovery. One patient failed to comply with medical management and died 5 months after initial diagnosis. Three patients lived within some of the most deprived areas in Scotland.ConclusionsThis case series demonstrates a previously unreported demographic in Scotland, as 50% of cases presented in Caucasian children. Although vitamin D deficiency DCM is relatively rare, it is wholly preventable. Our study confirms that vitamin D deficiency cardiomyopathy is reversible with prompt identification and supplementation. The current implementation of public health policy in the UK is failing to prevent children from developing the most severe manifestation of vitamin D deficiency.

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An electronic surveillance system for monitoring the hospital presentation of nutritional vitamin D deficiency in children in Scotland

Abstract: The incidence of vitamin D deficiency remains high in Scotland. An electronic surveillance system can provide data for studying the epidemiology of vitamin D deficiency but may underestimate the number of positive cases.

Cited by 4 publications

References 3 publications

Complex regional pain syndrome in children: incidence and clinical characteristics

Complex regional pain syndrome in children: incidence and clinical characteristics

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

Vitamin D deficiency cardiomyopathy in Scotland: a retrospective review of the last decade

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