Newborn Screening in Rhode Island Service Flow

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Newborn Screening in Rhode Island - Service Flow
Developmental Risk Assessment
Newborn Hearing Screening

• Blood Spot
• Biotinidase Deficiency
• Galactosemia
• Homocystinuria
• MSUD
• PKU
• MCAD
• CAH
• Congenital Hypothyroidism
• Hemoglobinopathies

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Newborn Screening in Rhode Island - Service Flow
Developmental Risk Assessment
Newborn Hearing Screening
Blood Spot

• Addressed by this grant
• Informing strategies (consumer and provider
  involvement)
• Capacity to respond to expansions in screening
  panel (Creating model procedure based on MCAD
  experience)

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Newborn Screening in Rhode Island - Service Flow
Blood Spot

• New England Newborn Screening Program
• Regional Newborn Screening Lab

Results

• VNA of Care New England
• Contract for tracking and follow-up

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Newborn Screening in Rhode Island - Service Flow

• VNA of Care New England
• Contract for tracking and follow-up
• Karen Lemke, RN - Follow-up Coordinator

Normal Results
Mail
Pediatric Care Provider

• Parents
• May or may not be informed of results

• Addressed by this grant
• Provider training/education plan - Annual
  Conference - Speakers
• Medical Home

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Newborn Screening in Rhode Island - Service Flow
VNA of Care New England
Abnormal Results
Family Outreach Home Visiting Program-
Assistance locating, communicating- Family
Support
phone and fax
Pediatric Care Provider
Specialty Care Provider

• Addressed by this grant
• Parent Consultant (Maria Dias) is developing
  medical passport, informational materials by
  diagnosis with other parents

• Parents
• Informed

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Newborn Screening in Rhode Island - Service Flow
Newborn Screening in Rhode Island - Service Flow
Parents Informed

• Addressed by this grant
• Parent Consultant (Maria Dias) is developing
  medical passport, informational materials by
  diagnosis with other parents

Specialty Care Provider

• Family-to-FamilySupport
• Support groups
• Family Voices
• RI Parent Information Network

Geneticist/ Genetic Counseling
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Newborn Screening in Rhode Island - Service Flow
Blood Spot
Lab - NENSP
VNA of Care New England
Family Outreach Home Visiting Program
Pediatric Care Provider
Specialty Care Provider
Parents
Family-to-FamilySupport
Geneticist/ Genetic Counseling
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Newborn Screening in Rhode Island - Service Flow
Addressed in this grant- Cost study
Blood Spot
Lab - NENSP
VNA of Care New England
Family Outreach Home Visiting Program
Pediatric Care Provider
Specialty Care Provider
Parents
Family-to-FamilySupport
Geneticist/ Genetic Counseling
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Newborn Screening in Rhode Island - Data Flow
Developmental Risk Assessment
Newborn Hearing Screening
Blood Spot Lab slip filled out at hospital
Birth Certificate
Lab - NENSPData Entry to CITRIX (demographics,
results, comments, reports, etc.)
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Newborn Screening in Rhode Island - Data Flow
VR2000
Developmental Risk Assessment
Newborn Hearing Screening
Blood Spot Lab slip filled out at hospital
Birth Certificate
?
Lab - NENSPData Entry to CITRIX (demographics,
results, comments, reports, etc.)

• Addressed in this grant
• Consolidation of data entry at hospital

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Newborn Screening in Rhode Island - Current Data
Flow
Blood Spot Lab slip filled out at hospital
Developmental Risk Assessment
Lab - NENSP CITRIX
Birth Certificate
Billing fileRI Dept. of Health

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Newborn Developmental Risk
Newborn Blood Spot
Vital Records
Home Visiting
Lead Prevention
Pediatric Providers
Early Intervention
RIHAP Rhode Island Hearing Assessment Program
Rhode Island Department of Health
WIC Special Supplemental Nutrition Program for
Women, Infants and Children
Immunizations
Birth Defects
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Newborn Screening in Rhode Island - Proposed Data
Flow
Blood Spot Lab slip filled out at hospital
VR2000
Demographics? NBS Specimen? VR2000 ID?
Developmental Risk Assessment
Lab - NENSP CITRIX
Birth Certificate
Billing fileRI Dept. of Health
?
Results

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Newborn Screening in Rhode Island - KIDSNET
related issues addressed in this grant

• Increase participating PCPs
• Assure 100 newborns screened (hearing,
  bloodspot, developmental risk)
• Medical Home Indicators
• CQI
• Final Diagnosis
• Sharing information
• Connection with Birth Defects Registry