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UID:1@neuromuscularstudygroup.org
DTSTART;VALUE=DATE:20160303
DTEND;VALUE=DATE:20160306
DTSTAMP:20160222T124204Z
URL:https://neuromuscularstudygroup.org/events/newborn-screening-for-neuro
 muscular-disease-improving-patient-outcomes-and-evaluating-public-health-i
 mpact/
SUMMARY:Newborn Screening for Neuromuscular Disease: Improving Patient Outc
 omes and Evaluating Public Health Impact
DESCRIPTION:Register for this event.\n\nThis two-day international meeting 
 will bring together experts in newborn screening\, pediatrics\, and neurom
 uscular disease as well as other public health stakeholders to review key 
 topics in newborn screening for Pompe disease (already included in the Rec
 ommended Universal Screening Panel) and Duchenne muscular dystrophy (DMD) 
 where pilot screening has already begun in the US.\n\nClinicians caring fo
 r Pompe disease and DMD patients are well aware of the morbidity associate
 d with delayed diagnosis and late access to available and effective therap
 ies.  While early diagnosis in the form of newborn screening (NBS) will a
 void poorer outcomes associated with late diagnosis\, there are still many
  gaps in our knowledge of how to appropriately follow and care for childre
 n who are presymtomatically diagnosed.\n\nThe neuromuscular providers invo
 lved in the care of symptomatic Pompe disease and DMD patients are in an e
 xcellent position\, given their neurologic expertise and existing multidis
 ciplinary clinics\, to be involved in the care of those children who are d
 iagnosed presymptomatically with Pompe disease and DMD by NBS.  The purpo
 se of this meeting is to help clinicians address gaps in their awareness a
 nd knowledge of: 1) the process of population based newborn screening for 
 Pompe disease and DMD\, 2) the evidence supporting practice guidelines for
  clinical follow-up of presymptomatic infants and children with Pompe dise
 ase and DMD\, and 3) the clinical infrastructure required to support ongoi
 ng collection of data and evidence to improve clinical outcomes of Pompe d
 isease and DMD.\n\nThe primary goal of this meeting will be addressing the
  components of 1) laboratory screening and 2) short- and long-term clinica
 l follow-up needed to ensure improved health outcomes in Pompe disease and
  DMD.   We will also discuss how these programs can be implemented to ef
 ficiently collect information about the public health and societal impact 
 of population-based neuromuscular screening programs.
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LOCATION:St Louis Union Station\, 1820 Market Street\, St Louis\, Missouri\
 , 63103\, United States
GEO:38.6281256;-90.20803620000004
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