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- Wang, CH, et al.
(author)
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Consensus statement on standard of care for congenital muscular dystrophies
- 2010
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In: Journal of child neurology. - : SAGE Publications. - 1708-8283 .- 0883-0738. ; 25:12, s. 1559-1581
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Journal article (peer-reviewed)abstract
- Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee.
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| 2. |
- Wang, CH, et al.
(author)
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Consensus statement on standard of care for congenital myopathies
- 2012
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In: Journal of child neurology. - : SAGE Publications. - 1708-8283 .- 0883-0738. ; 27:3, s. 363-382
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Journal article (peer-reviewed)abstract
- Recent progress in scientific research has facilitated accurate genetic and neuropathological diagnosis of congenital myopathies. However, given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. This consensus statement aims to provide care guidelines for congenital myopathies. The International Standard of Care Committee for Congenital Myopathies worked through frequent e-mail correspondences, periodic conference calls, 2 rounds of online surveys, and a 3-day workshop to achieve a consensus for diagnostic and clinical care recommendations. The committee includes 59 members from 10 medical disciplines. They are organized into 5 working groups: genetics/diagnosis, neurology, pulmonology, gastroenterology/nutrition/speech/oral care, and orthopedics/rehabilitation. In each care area the authors summarize the committee’s recommendations for symptom assessments and therapeutic interventions. It is the committee’s goal that through these recommendations, patients with congenital myopathies will receive optimal care and improve their disease outcome.
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| 5. |
- Price, OJ, et al.
(author)
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Prevalence of lower airway dysfunction in athletes: a systematic review and meta-analysis by a subgroup of the IOC consensus group on 'acute respiratory illness in the athlete'
- 2022
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In: British journal of sports medicine. - : BMJ. - 1473-0480 .- 0306-3674. ; 56:4, s. 213-
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Journal article (peer-reviewed)abstract
- To report the prevalence of lower airway dysfunction in athletes and highlight risk factors and susceptible groups.DesignSystematic review and meta-analysis.Data sourcesPubMed, EBSCOhost and Web of Science (1 January 1990 to 31 July 2020).Eligibility criteriaOriginal full-text studies, including male or female athletes/physically active individuals/military personnel (aged 15–65 years) who had a prior asthma diagnosis and/or underwent screening for lower airway dysfunction via self-report (ie, patient recall or questionnaires) or objective testing (ie, direct or indirect bronchial provocation challenge).ResultsIn total, 1284 studies were identified. Of these, 64 studies (n=37 643 athletes) from over 21 countries (81.3% European and North America) were included. The prevalence of lower airway dysfunction was 21.8% (95% CI 18.8% to 25.0%) and has remained stable over the past 30 years. The highest prevalence was observed in elite endurance athletes at 25.1% (95% CI 20.0% to 30.5%) (Q=293, I2=91%), those participating in aquatic (39.9%) (95% CI 23.4% to 57.1%) and winter-based sports (29.5%) (95% CI 22.5% to 36.8%). In studies that employed objective testing, the highest prevalence was observed in studies using direct bronchial provocation (32.8%) (95% CI 19.3% to 47.2%). A high degree of heterogeneity was observed between studies (I2=98%).ConclusionLower airway dysfunction affects approximately one in five athletes, with the highest prevalence observed in those participating in elite endurance, aquatic and winter-based sporting disciplines. Further longitudinal, multicentre studies addressing causality (ie, training status/dose–response relationship) and evaluating preventative strategies to mitigate against the development of lower airway dysfunction remain an important priority for future research.
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| 6. |
- Reier-Nilsen, T, et al.
(author)
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Diagnostic approach to lower airway dysfunction in athletes: a systematic review and meta-analysis by a subgroup of the IOC consensus on 'acute respiratory illness in the athlete'
- 2023
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In: British journal of sports medicine. - : BMJ. - 1473-0480 .- 0306-3674. ; 57:8, s. 481-
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Journal article (peer-reviewed)abstract
- To compare the performance of various diagnostic bronchoprovocation tests (BPT) in the assessment of lower airway dysfunction (LAD) in athletes and inform best clinical practice.DesignSystematic review with sensitivity and specificity meta-analyses.Data sourcesPubMed, EBSCOhost and Web of Science (1 January 1990–31 December 2021).Eligibility criteriaOriginal full-text studies, including athletes/physically active individuals (15–65 years) who underwent assessment for LAD by symptom-based questionnaires/history and/or direct and/or indirect BPTs.ResultsIn 26 studies containing data for quantitative meta-analyses on BPT diagnostic performance (n=2624 participants; 33% female); 22% had physician diagnosed asthma and 51% reported LAD symptoms. In athletes with symptoms of LAD, eucapnic voluntary hyperpnoea (EVH) and exercise challenge tests (ECTs) confirmed the diagnosis with a 46% sensitivity and 74% specificity, and 51% sensitivity and 84% specificity, respectively, while methacholine BPTs were 55% sensitive and 56% specific. If EVH was the reference standard, the presence of LAD symptoms was 78% sensitive and 45% specific for a positive EVH, while ECTs were 42% sensitive and 82% specific. If ECTs were the reference standard, the presence of LAD symptoms was 80% sensitive and 56% specific for a positive ECT, while EVH demonstrated 65% sensitivity and 65% specificity for a positive ECT.ConclusionIn the assessment of LAD in athletes, EVH and field-based ECTs offer similar and moderate diagnostic test performance. In contrast, methacholine BPTs have lower overall test performance.PROSPERO registration numberCRD42020170915.
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| 7. |
- Sewry, N., et al.
(author)
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Pre-race screening and stratification predicts adverse events-A 4-year study in 29585 ultra-marathon entrants, SAFER X
- 2020
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In: Scandinavian Journal of Medicine & Science in Sports. - : Wiley. - 0905-7188 .- 1600-0838. ; 30:7, s. 1205-1211
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Journal article (peer-reviewed)abstract
- Background Pre-race screening and risk stratification in recreational endurance runners may predict adverse events (AEs) during a race. Aim To determine if pre-race screening and risk stratification predict AEs during a race. Methods A total of 29 585 participants (Male 71.1%, average age = 42.1 years; Female 28.9%, average age = 40.2 years) at the Two Oceans ultra-marathon races (56 km) completed a pre-race medical screening questionnaire and were risk stratified into four pre-specified groups [very high risk (VHR; existing cardiovascular disease-CVD:3.2%), high risk (HR; risk factors for CVD:10.5%), intermediate risk (IR; existing other chronic disease, medication use or injury:53.3%), and low risk (LR:33.0%)]. Race starters, finishers, and medical encounters (ME) were recorded. Did-not-start (DNS) rate (per 1000 entrants that did-not-start), did-not-finish (DNF) rate (per 1000 starters that did-not-finish), AE rate [per 1000 starters that either DNF or had an ME], and ME rate (per 1000 starters with an ME) were compared across risk categories. Results Adverse events were significantly higher (per 1000 starters; 95%CI) in the VHR (68.9; 52.4-89.9:P = .0407) compared with the LR (51.3; 46.5-56.7). The DNS rate was significantly different between the IR (190.3; 184.0-196.9) and LR (207.4; 199.2-216.0: P = .0011). DNF rates were not different in the VHR (56.4; 41.9-75.9) compared to LR (44.2; 39.7-49.1: P = .1295), and ME rate was also not different between risk categories, however, VHR (12.9; 7.0-23.9) was approaching significance compared to LR (6.9; 5.2-9.1: P = .0662). Conclusion Pre-race medical screening and risk stratification may identify athletes at higher risk of AEs. Further studies should be performed in larger cohorts to clarify the role of pre-race medical screening in reducing AEs in endurance runners.
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| 8. |
- Sewry, N., et al.
(author)
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Risk factors for not finishing an ultramarathon: 4-year study in 23,996 race starters, SAFER XXI
- 2022
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In: Journal of Sports Medicine and Physical Fitness. - : Edizioni Minerva Medica. - 0022-4707 .- 1827-1928. ; 62:5, s. 710-715
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Journal article (peer-reviewed)abstract
- BACKGROUND: Limited data support prerace medical screening to identify risk factors for not finishing an endurance running race. The aim of the study was to determine risk factors associated with not finishing an ultramarathon. METHODS: A prospective, cross-sectional study of Two Oceans ultramarathon (56 km) race starters who completed a prerace medical screening questionnaire. Race day environmental conditions were recorded on race day. Univariate analyses of risk factors associated with the did-not-finish (DNF) included race day factors and prerace medical screening history. RESULTS: Risk factors for DNF amongst 23,996 starters during the 56 km race included older age and females (P<0.0001). After adjusting for age and sex, the following were significant univariate risk factors: fewer years of running (P<0.0001), less previous race experience (P<0.0001), less training/racing per week (P=0.0002), lower average weekly training distance (P=0.0016), slower race vs. training speed (P<0.0001), lack of allergies (P=0.0100) and average wet-bulb globe temperature (P<0.0001). CONCLUSIONS: Females, older age, training-related factors (less training/racing, average weekly training distance, race vs. training speed) and average wet-bulb temperature, were risk factors for not finishing an ultramarathon. The results may not only assist runners and coaches in race preparation, but also have clinical implications for the medical planning prior to races.
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