Pain in children with Spinal Muscular Atrophy Type II
Research type
Research Study
Full title
Pain in Children with Spinal Muscular Atrophy Type II
IRAS ID
224437
Contact name
Katie Robinson
Contact email
Sponsor organisation
University of Limerick
Duration of Study in the UK
0 years, 4 months, 29 days
Research summary
Title: Pain in children with Spinal muscular atrophy type II\nPain has been shown to be a symptom in neuromuscular disorders however research on specific disorders is limited. The purpose of this study is to explore the prevalence, severity and intensity of pain in children with SMA Type II as research to date has focused solely on adolescents and adults with this condition. This study also seeks to examine components of pain interference with everyday life, identify factors which aggravate and relieve pain, and gain a better understanding of the nature of pain in children with SMA Type II. This study will also explore the relationship between reported back and neck pain and spinal surgery.\nMethods: A multi-centre study is proposed, the sites for the study are Belfast City hospital, Central Remedial Clinic Dublin, Enable Ireland Cork and Adelaide and Meath National Children’s Hospital Tallaght (AMNCH), Dublin. The study will use a quantitative study design, consisting of child reported, parent reported and child- assisted reported outcome measures of pain symptoms and interference. Children aged 5-18years with a diagnosis of SMA Type II will be included in this study. Once a parent and child meeting takes place to fill out the outcome questionnaires no further follow-up will be required from participants. It is anticipated that this project will be complete by November 2017.\nIt is hoped that the results of this study will inform our understanding of pain prevalence amongst children living with SMA Type II, which is important in understanding the disease course and in planning services for this cohort. Identifying potential pain sources and understanding pain interference will guide treatment, and potentially enhance patient experience and quality of life. This knowledge can be used to develop existing care guidelines and guide future research.\n\n\n
REC name
South Central - Oxford A Research Ethics Committee
REC reference
17/SC/0444
Date of REC Opinion
28 Sep 2017
REC opinion
Further Information Favourable Opinion