Medicine and Health Sciences Commons^™

Eight Years After An International Workshop On Myotonic Dystrophy Patient Registries: Case Study Of A Global Collaboration For A Rare Disease., Libby Wood, Guillaume Bassez, Corinne Bleyenheuft, Craig Campbell, Louise Cossette, Aura Cecilia Jimenez-Moreno, Yi Dai, Hugh Dawkins, Jorge Alberto Diaz Manera, Celine Dogan, Rasha El Sherif, Barbara Fossati, Caroline Graham, James Hilbert, Kristinia Kastreva, En Kimura, Lawrence Korngut, Anna Kostera-Pruszczyk, Christopher Lindberg, Bjorn Lindvall, Elizabeth Luebbe, Anna Lusakowska, Radim Mazanec, Giovani Meola, Liannna Orlando, Masanori P Takahashi, Stojan Peric, Jack Puymirat, Vidosava Rakocevic-Stojanovic, Miriam Rodrigues, Richard Roxburgh, Benedikt Schoser, Sonia Segovia, Andriy Shatillo, Simone Thiele, Ivailo Tournev, Baziel Van Engelen, Stanislav Vohanka, Hanns Lochmüller

Paediatrics Publications

Background

Myotonic Dystrophy is the most common form of muscular dystrophy in adults, affecting an estimated 10 per 100,000 people. It is a multisystemic disorder affecting multiple generations with increasing severity. There are currently no licenced therapies to reverse, slow down or cure its symptoms. In 2009 TREAT-NMD (a global alliance with the mission of improving trial readiness for neuromuscular diseases) and the Marigold Foundation held a workshop of key opinion leaders to agree a minimal dataset for patient registries in myotonic dystrophy. Eight years after this workshop, we surveyed 22 registries collecting information on myotonic dystrophy patients to assess …

Electrical Stimulation For Treating Pressure Injuries: Evaluation Of A Knowledge Mobilization Project, Lyndsay Orr

Electronic Thesis and Dissertation Repository

Pressure ulcers (PrU) are a secondary health complication that cause increased morbidity, mortality and decreased quality of life. PrUs have also been shown to have a significant financial burden on the healthcare system. Current best practice guidelines strongly recommend the use of Electrical Stimulation (E-Stim) to increase healing rates of PrUs. Unfortunately, there has been lack of uptake for the use of E-Stim in clinical practice. To address this gap in practice, a knowledge mobilization project called the E-Stim Collaboration Project was developed. The aim of this dissertation was to 1) determine if an education program can change knowledge, attitudes …

The ‘Meanings’ And ‘Enactments’ Of Science And Technology: Ant-Mobilities’ Analysis Of Two Cases, Farrukh Chishtie

Electronic Thesis and Dissertation Repository

In this work I study two cases involving practices of science and technology in the backdrop of related and recent curricular reforms in both settings. The first case study is based on the 2005 South Asian earthquake in Muzaffarabad, Pakistan which led to massive losses including large scale injuries and disabilities. This led to reforms at many levels ranging from disaster management to action plans on disability, including educational reforms in rehabilitation sciences. Local efforts to deal with this disaster led to innovative approaches such as the formation of a Community Based Rehabilitation (CBR) model by a local NGO, which …

Mathematical Abilities In Children With Developmental Language Disorder, Alexandra M. Cross, Lisa M.D. Archibald, Marc F. Joanisse

Health and Rehabilitation Sciences Publications

Purpose. The present paper provides a scoping review of the literature on mathematical abilities in developmental language disorder (DLD). Children with DLD typically struggle with learning in school, however the mechanism by which DLD impacts academic success is unclear. Mathematics involves demands in the multiple domains, and therefore holds potential for examining the relationship between language and academic performance on tasks mediated by verbal and non-verbal demands.

Methods. A scoping review was performed via computerized database searching to examine literature on mathematics and DLD. The 21 papers meeting inclusion criteria compared children with typical development or DLD on various tasks …