Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment May 13, 2010 May 13, 2010 Advisory Committee on Heritable Disorders Advisory Committee on Heritable Disorders in Newborns and Children in Newborns and Children National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives
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Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment
Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives. May 13, 2010 Advisory Committee on Heritable Disorders in Newborns and Children. Goal - PowerPoint PPT Presentation
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Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment
Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment
May 13, 2010May 13, 2010
Advisory Committee on Heritable Disorders in Advisory Committee on Heritable Disorders in Newborns and ChildrenNewborns and Children
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
Survey Survey
GoalGoal Plan for the future expansion of the National Newborn Screening Plan for the future expansion of the National Newborn Screening
Information System (NNSIS)Information System (NNSIS)
DesignDesign Drafted and reviewed by team from HRSA, NICHD, NNSGRC, Drafted and reviewed by team from HRSA, NICHD, NNSGRC,
Genetic Alliance, CDC, APHL, ACMG-NCC & NBSTRN-CC, and Genetic Alliance, CDC, APHL, ACMG-NCC & NBSTRN-CC, and selected state newborn screening programs (NBS)selected state newborn screening programs (NBS)
ParticipantsParticipants Current users of NNISCurrent users of NNIS Two from each state and territoryTwo from each state and territory
• Laboratory• Short-Term Follow-Up (STFU)
TimingTiming Administered April 2010 to May 2010Administered April 2010 to May 2010
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National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
Survey emailed to 102 Survey emailed to 102 individualsindividuals
2 from each state2 from each state Responses from 64 Responses from 64
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 76%Response Rate – 76%
NNSIS Data Entry & Frequency
NNSIS Data Entry & Frequency
Answer Options
Response Percent
As time permits 38.1%
Daily 33.3%
Yearly 27.0%
Monthly 17.5%
When reminded 12.7%
Quarterly 6.3%
Never 6.3%
Answers Provided
Response Percent
Short Staff 54%STFU Enter Data 36%Contract for Others to Enter Data
1%
Answer Options
Response Percent
Monthly < 10 hours
30.8%
Annually < 10 hours
20.5%
Monthly < 1 hour
17.9%
Do Not Enter Data
17.9%
Annually > 10 hours
10.3%
Monthly < 20 hours
2.6%
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 53%Response Rate – 53%
NNSIS Website UseNNSIS Website Use
Answer Options
Response Percent
Monthly 50.0%When requested
25.0%
Quarterly 21.9%Yearly 12.5%Daily 9.4%Never 6.3%
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 81%Response Rate – 81%
NNSIS Information Type Utilized
NNSIS Information Type Utilized
Answer Options Response PercentNumber of diagnosed cases 84.6%Amount of NBS fee 71.2%Laboratory method in use 55.8%Number of births 53.8%Number of tests reported on initial screens 50.0%Number of unsatisfactory specimens 50.0%Time from birth to treatment/diagnosis (depending on condition)
48.1%
Number of not normal results on initial screens 48.1%Number of tests reported on subsequent screens 34.6%Number of not normal results on subsequent screens
30.8%
Race/ethnicity of diagnosed cases 26.9%Other (please specify) 21.2%Sex of diagnosed cases 19.2%
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
NNSIS Information Uses for Programs
NNSIS Information Uses for Programs
Answer OptionsResponse Percent
Program evaluation and/or development
53.7%
Daily, weekly, monthly or yearly reports.
42.6%
Other (please specify)
29.6%
Quality assurance.27.8%
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
NNSIS InformationNNSIS InformationNational Coordinating Center for the Regional
Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 98%Response Rate – 98%
Program Database Types and Usage
Program Database Types and Usage
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 42%Response Rate – 42%
NNSIS ExpansionNNSIS Expansion
Answers ProvidedInclude Maternal DataAbility to Edit Individual CaseExpanded AnalyticsExpanded Diagnostic CategoriesImproved Classification of DisordersIncorporate National Standards
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 50%Response Rate – 50%
NBS Program Future Information Needs
NBS Program Future Information Needs
Answers ProvidedLTFULink NBS & VitalReal Time LinkageAutomatic DownloadsHL7 Data ExchangeElectronic Communication with Providers
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Response Rate – 100%Response Rate – 100%
NNSIS Case DefinitionNNSIS Case DefinitionNational Coordinating Center for the Regional
Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
Demographic Information Confirmation
Demographic Information Confirmation
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
Long-Term Follow-UpLong-Term Follow-UpNational Coordinating Center for the Regional
Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
Screening ConfirmationScreening ConfirmationNational Coordinating Center for the Regional
Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 60%Response Rate – 60%
Second Screen LinkageSecond Screen LinkageNational Coordinating Center for the Regional
Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 78%Response Rate – 78%
NBS and NBH Data Exchange
NBS and NBH Data Exchange
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 78%Response Rate – 78%
Barriers to Information Technology Expansion & Type of Support Needed
Barriers to Information Technology Expansion & Type of Support Needed
Answers ProvidedComplianceFundingStaffingLack of Buy InConfidentiality ConcernsLack of ExpertiseNot a PriorityLack Legal AuthorityPolitical Issues
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
Concerns About Information Sharing
Concerns About Information Sharing
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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Response Rate – 100%Response Rate – 100%
Expanded Information Concerns
Expanded Information Concerns
National Coordinating Center for the Regional Genetic and
Newborn Screening Service Collaboratives
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DiscussionDiscussion
DiscussionDiscussion Survey FeedbackSurvey Feedback Results FeedbackResults Feedback Use of Survey ResultsUse of Survey Results
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National Coordinating Center for the Regional Genetic and