10.6084/m9.figshare.4702687.v1
Lefter S.
Lefter
S.
Hardiman O.
Hardiman
O.
Ryan A.M.
Ryan
A.M.
Supplementary Material for: Methodology and Design of a National Epidemiological Study on Adult Neuromuscular Disease
Karger Publishers
2017
Neuromuscular diseases
Epidemiology
Research methods
2017-02-28 15:19:21
Dataset
https://karger.figshare.com/articles/dataset/Supplementary_Material_for_Methodology_and_Design_of_a_National_Epidemiological_Study_on_Adult_Neuromuscular_Disease/4702687
<p><b><i>Background:</i></b> There have been no previous
population-based studies of adult neuromuscular disease (NMD) in the
Republic of Ireland (RoI). This article describes methods and
case-ascertainment strategies used to identify patients with inherited
and acquired NMD for the purpose of obtaining the prevalence of these
disorders in the RoI. <b><i>Methods:</i></b> This epidemiological study
was conducted between January 2012 and January 2014. Prospective and
retrospective (until 1990) case identification of adults with inherited
and acquired NMD have been carried out. Multiple countrywide patient
identification sources including neuromuscular clinics, hospital
neurology databases, the hospital in-patient enquiry (HIPE) system of
each hospital and the records of Muscular Dystrophy Ireland, a nonprofit
organisation, were used. <b><i>Results:</i></b> In total, 3,724
potential cases were identified. Of these, 1,083 were excluded because
869 cases represented duplicates or triplicates, 133 were coded
incorrectly in HIPE, 74 patients were deceased and 7 patients had moved
out of the country. The highest number of cases was identified in
neurology databases and HIPE (1,724 and 884, respectively). A total of
2,641 individuals fulfilled the inclusion criteria and were included in
the study. <b><i>Conclusion:</i></b> Detailed epidemiological data of
this nature is difficult to acquire in the current structure of the
Irish health service, requiring multiple sources including input from
voluntary patient organisations. The development of a national patient
registry for some or all of these conditions would greatly facilitate
standardised data recording, giving a true picture of the burden of
neuromuscular diseases in a population.</p>