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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(More)
BACKGROUND Mood and anxiety disorders are common psychiatric conditions among adult patients with fibromyalgia syndrome, but little is known about whether psychiatric disorders are prevalent among pediatric patients with fibromyalgia. OBJECTIVE The primary objective of this study was to assess the prevalence of mood, anxiety, and behavioral disorders in a(More)
The Handbook of Moral Development is the defi niti ve source of theory and research on the development of morality. Since the publicati on of the fi rst editi on, groundbreaking approaches to studying the development of morality have re-invigorated debates about what it means to conceptualize and measure morality in early childhood, how children understand(More)
OBJECTIVE To describe school absences in adolescents with Juvenile Primary Fibromyalgia Syndrome (JPFS) and examine the relationship between school absenteeism, pain, psychiatric symptoms, and maternal pain history. METHODS Adolescents with JPFS (N = 102; mean age 14.96 years) completed measures of pain and depressive symptoms, and completed a psychiatric(More)
Systematic review data demonstrate that 5% of ALS cases are familial (FALS). Causative superoxide dismutase-1 (SOD1) mutations are identified in 10-20% of FALS. Few reports of FALS epidemiology exist in Canada. We completed a retrospective review of all FALS cases within the province of Alberta between 2002 and 2011. Descriptive summaries of genotypes(More)
The study analyses adolescents' positively charged versus negatively charged moral emotion expectancies. Two hundred and five students (M= 14.83 years, SD= 2.21) participated in an interview depicting various situations in which a moral norm was either regarded or transgressed. Emotion expectancies were assessed for specific emotions (pride, guilt) as well(More)
the outset of this project, one aim was to define a set of core data fields to include in all neurological registries in Canada. This project targeted neurological registries in Canada for all priority neurological conditions identified in the call for proposal including: Alzheimer's disease (AD) and other dementias, amyotrophic lateral sclerosis (ALS),(More)
section summarizes the ethical and legal considerations that will impact the creation and operation of neurological disease registries in Canada. This document is not meant to provide legal or ethical advice. In order to ensure that applicable laws and organizational policies are adhered to in an appropriate manner, it is recommended that legal advisors and(More)
section summarizes the considerations surrounding patient recruitment that Canadian neurological registries should address during planning and design. In preparation of this guideline, we examined relevant Canadian and international literature; Canadian policy and legislation. We also consulted with Canadian privacy officers and specialists in research(More)
BACKGROUND Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature. METHODS To inform the development of future(More)