The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology.
BACKGROUND
This report focuses on the common protocol developed by the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) for population-based surveillance of Duchenne and Becker muscular dystrophy (DBMD) among 4 states (Arizona, Colorado, Iowa, and New York).


METHODS
The network sites have developed a case definition and surveillance protocol along with software applications for medical record abstraction, clinical review, and pooled data. Neuromuscular specialists at each site review the pooled data to determine if a case meets the case criteria. Sources of potential cases of DBMD include neuromuscular specialty clinics, service sites for children with special healthcare needs, and hospital discharge databases. Each site also adheres to a common information assurance protocol.


RESULTS
A population-based surveillance system for DBMD was created and implemented in participating states.


CONCLUSIONS
The development and implementation of the population-based system will allow for the collection of information that is intended to provide a greater understanding of DBMD prevalence and health outcomes.
Miller
Lisa A
LA
Colorado Department of Public Health and Environment, Denver, Colorado 80246-1530, USA. lisa.miller@state.co.us
Romitti
Paul A
PA
Cunniff
Christopher
C
Druschel
Charlotte
C
Mathews
Katherine D
KD
Meaney
F John
FJ
Matthews
Dennis
D
Kantamneni
Jiji
J
Feng
Zhen-Fang
ZF
Zemblidge
Nancy
N
Miller
Timothy M
TM
Andrews
Jennifer
J
Fox
Deborah
D
Ciafaloni
Emma
E
Pandya
Shree
S
Montgomery
April
A
Kenneson
Aileen
A
D000043:Abstracting and Indexing / Q000379:methods*; D000293:Adolescent; D000328:Adult; D001130:Arizona / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D002985:Clinical Protocols / Q000592:standards*; D003120:Colorado / Q000453:epidemiology; D003625:Data Collection / Q000379:methods*; D005260:Female; D006801:Humans; D007484:Iowa / Q000453:epidemiology; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000175:diagnosis / Q000453:epidemiology*; D009518:New York / Q000453:epidemiology; D011159:Population Surveillance / Q000379:methods*; D015995:Prevalence