Background/Objectives: The purpose of this study was to develop an activity energy expenditure (AEE) prediction equation for the Actiheart activity monitor for use in children with chronic disease. Subjects/Methods: In total, 63 children, aged 8-18 years with different types of chronic disease (juvenile arthritis, hemophilia, dermatomyositis, neuromuscular disease, cystic fibrosis or congenital heart disease) participated in an activity testing session, which consisted of a resting protocol, working on the computer, sweeping, hallway walking, steps and treadmill walking at three different speeds. During all activities, actual AEE was measured with indirect calorimetry and the participants wore an Actiheart on the chest. Resting EE and resting heart rate were measured during the resting protocol and heart rate above sleep (HRaS) was calculated. Results: Mixed linear modeling produced the following prediction equation:Estimated AEE ðJ=kg= minÞ ¼ À93:7 þ ð4:8ÂHRaSÞþð0:04ÂAccelerometer CountsÞþð39:8ÂGender ðgirls ¼ 0; boys ¼ 1ÞÞ:This equation results in a nonsignificant mean difference of 2.1 J/kg/min (limits of agreement: À144.2 to 148.4 J/kg/min) for the prediction of AEE from the Actiheart compared with actual AEE. Conclusions: The Actiheart is valid for the use of AEE determination when using the new prediction equation for groups of children with chronic disease. However, the prediction error limits the use of the equation in individual subjects.
Background: Patient registries represent an important method of organizing "real world" patient information for clinical and research purposes. Registries can facilitate clinical trial planning and recruitment and are particularly useful in this regard for uncommon and rare diseases. Neuromuscular diseases (NMDs) are individually rare but in aggregate have a significant prevalence. In Canada, information on NMDs is lacking. Barriers to performing Canadian multicentre NMD research exist which can be overcome by a comprehensive and collaborative NMD registry. Methods: We describe the objectives, design, feasibility and initial recruitment results for the Canadian Neuromuscular Disease Registry (CNDR). Results: The CNDR is a clinic-based registry which launched nationally in June 2011, incorporates paediatric and adult neuromuscular clinics in British Columbia, Alberta, Ontario, Quebec, New Brunswick and Nova Scotia and, as of December 2012, has recruited 1161 patients from 12 provinces and territories. Complete medical datasets have been captured on 460 "index disease" patients. Another 618 "non-index" patients have been recruited with capture of physicianconfirmed diagnosis and contact information. We have demonstrated the feasibility of blended clinic and central office-based recruitment. "Index disease" patients recruited at the time of writing include 253 with Duchenne and Becker muscular dystrophy, 161 with myotonic dystrophy, and 71 with ALS. Conclusions: The CNDR is a new nationwide registry of patients with NMDs that represents an important advance in Canadian neuromuscular disease research capacity. It provides an innovative platform for organizing patient information to facilitate clinical research and to expedite translation of recent laboratory findings into human studies.RÉSUMÉ: Le RCMN : collaborer pour procurer de nouveaux traitements aux Canadiens. Contexte : Un registre de patients est une façon très avantageuse d'organiser l'information concrète au sujet de patients à des fins cliniques ou de recherche. Les registres peuvent faciliter la planification d'essais cliniques et le recrutement et sont particulièrement utiles à cet égard quand il s'agit de maladies rares. Les maladies neuromusculaires (MNM) considérées individuellement sont des maladies rares mais elles ont une prévalence non négligeable si elles sont regroupées. Au Canada, on manque d'informations sur les MNM. Il existe des obstacles à la réalisation de recherches multicentriques sur les MNM au Canada. Ces obstacles peuvent être surmontés par l'établissement d'un registre détaillé à des fins de collaboration sur les MNM. Méthode : Nous décrivons les objectifs, le plan, la faisabilité et les résultats du recrutement initial du Registre canadien des maladies neuromusculaires. Résultats : Le RCMN est un registre basé sur la clinique qui a été inauguré à travers le Canada en juin 2011. Il inclut des cliniques neuromusculaires pédiatriques et adultes et inclut des patients de Colombie-Britannique, d'Alberta, de l'Ontario, du Québe...
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