Newborn Screening Advisory and Medical Management Groups

Newborn Screening Follow-up Coordinating Centers and Advisory Committees 

Follow-up Coordinating Centers: 

The Michigan Newborn Screening Program ensures that all infants with positive newborn screens receive appropriate follow-up through one of the designated coordinating centers.  The coordinating centers are responsible for arranging prompt medical management that includes confirmatory diagnostic testing, clinical evaluations by medical specialists, and treatment.  Each center consists of physicians and clinical staff who are experts in a particular disease or group of diseases on the newborn screening panel.  In addition to serving the newborn screening population, the coordinating centers provide educational outreach to both families and professionals and leadership for the state newborn screening quality improvement advisory committees.

1. Cystic Fibrosis

Michigan Medicine at University of Michigan – (734) 647-8938

The Cystic Fibrosis Newborn Screening Coordinating Center at the University of Michigan ensures that infants with positive newborn screens for cystic fibrosis are followed up by one of five accredited Cystic Fibrosis Foundation care centers located in Ann Arbor, Detroit, Grand Rapids, Kalamazoo, and Lansing.  Infants referred to these centers all receive confirmatory sweat testing followed by genetic counseling and/or pulmonary assessments as appropriate.  Often, these services are provided on the same day.  

2. Hemoglobinopathies

Sickle Cell Disease Association of America (SCDAA), Michigan Chapter – (800) 842-0973

The SCDAA in Detroit serves as the coordinating center for follow-up of all hemoglobinopathies and hemoglobin traits identified through newborn screening, including sickle cell and thalassemia. SCDAA clinical staff and patient advocates across the state are responsible for coordinating confirmatory testing, providing family education, and identifying local hematologists for ongoing disease management.  Through a subcontract with the Children’s Hospital of Michigan Comprehensive Sickle Cell Clinic, additional clinical and psychosocial support services are provided for children with sickle cell disease and their families in the Detroit area.

The role of the SCDAA extends beyond NBS to both adults with sickle cell disease and the general public, focusing on raising awareness of hemoglobinopathies and supporting families affected by these diagnoses.  They also offer health status assessments to individuals with sickle cell disease across Michigan, identifying barriers to care and assisting in accessing services.

3. Metabolic Disorders

C.S. Mott Children’s Hospital, Michigan Medicine: (734) 764-0579

Infants with positive screens for metabolic disorders on the newborn screening panel are promptly referred to Michigan Medicine. This institution serves as the newborn screening coordinating center arranging for confirmatory testing and clinical evaluations for metabolic disorders on the newborn screening panel, including amino acid, organic acid, and fatty acid oxidation disorders, galactosemia, biotinidase deficiency and guanidinoacetate methyltransferase deficiency.   

4. Pediatric Endocrine Disorders

Michigan Medicine at University of Michigan – (734) 647-8938

The Pediatric Endocrine Newborn Screening Coordinating Center at the University of Michigan coordinates follow-up for all infants with positive newborn screens for congenital hypothyroidism and congenital adrenal hyperplasia.  Once confirmatory testing is completed, ongoing medical management is provided by local pediatric endocrinologists.  Three-year follow-up surveys are conducted on all children diagnosed with congenital hypothyroidism to determine if they are still being treated and whether they have received diagnostic re-evaluations.

5. Pompe Disease and Mucopolysaccharidosis Type I (MPS I)

Children’s Hospital of Michigan – (313) 832-9330

Pediatric Genetics, C.S Mott Children's Hospital, Michigan Medicine – (734) 764-0579

Infants with positive screens for Pompe disease or MPS I are promptly referred to Children’s Hospital of Michigan or the University of Michigan. These institutions serve as newborn screening coordinating centers, arranging for confirmatory testing and clinical evaluations based on the family’s treatment center of choice.

6. Primary Immunodeficiency Disorders           

Children’s Hospital of Michigan – (313) 806-6571

Infants with positive newborn screens for severe combined immunodeficiency disorder (SCID) and other primary immunodeficiency disorders with T-cell lymphopenia are promptly referred to the Primary Immunodeficiency Newborn Screening Coordinating Center at Children’s Hospital of Michigan for follow-up.  The families can choose one of three management centers for confirmatory testing and treatment, located at Children’s Hospital of Michigan, University of Michigan Mott Children’s Hospital, and Helen DeVos Children’s Hospital. 

7. X-linked Adrenoleukodystrophy

Michigan Medicine at University of Michigan – (734) 647-8938

Michigan Medicine at the University of Michigan serves as the coordinating center for infants with positive screens for X-linked adrenoleukodystrophy. Coordinating center staff work with families and their primary care providers to ensure they receive appropriate follow-up at one of three medical management centers located in Ann Arbor, Detroit, and Grand Rapids. Each center offers multidisciplinary services tailored to the families’ needs that may include diagnostic testing and specialty visits with geneticists, neurologists, endocrinologists, or transplant physicians.

8. Spinal Muscular Atrophy

Michigan Medicine at University of Michigan – (734) 647-8938

Michigan Medicine coordinates follow-up for infants with positive newborn screens for spinal muscular atrophy. They work closely with four designated Muscular Dystrophy Association (MDA) referral centers across the state to ensure that families receive prompt follow-up and confirmatory testing at a center of their choice. The MDA clinics, located at University of Michigan, DeVos Children’s Hospital, Children’s Hospital of Michigan, and Beaumont Hospital, all offer expert multidisciplinary clinical care and FDA approved treatments. 

Advisory Committees: 

The Newborn Screening Advisory Committees provide expertise and guidance to MDHHS regarding newborn screening. Membership varies based on each committee’s role but often includes representatives from NBS coordinating centers, pediatric specialties, Children’s Special Health Care Services, allied health professions, health care organizations, and parents.  Meetings are held on a regular basis to review screening performance metrics, policies, recommendations, and strategies to improve NBS in Michigan. 

Technical Advisory Committee (TAC) – The TAC serves as the department’s technical expert committee for providing final review on all major NBS procedural and policy changes, including the addition of new disorders to the screening panel.

Quality Assurance Advisory Committee (QAAC) – The legislatively mandated QAAC is responsible for conducting a yearly review of NBS Program activities and TAC recommendations.  Proposed changes to the screening panel or NBS fee are voted on and recommendations submitted in a written report to the MDHHS director for approval.

Disease-Specific Advisory Committees – Disease-specific advisory committees assist in developing follow-up procedures and management protocols for infants with positive newborn screens and provide ongoing clinical expertise to the NBS Program.  Committees include: 

• Critical Congenital Heart Disease (CCHD) NBS Advisory Committee
• Cystic Fibrosis Quality Improvement Committee (CFQIC)
• Hemoglobinopathy Quality Improvement Committee (HemQIC)
• Metabolic Quality Improvement Committee (MetQIC)
• Pediatric Endocrinology Advisory Council (PEAC)
• Primary Immunodeficiency Disorders Quality Improvement Committee (PIDQIC)
• Pompe/MPS I NBS Advisory Committee
• X-linked Adrenoleukodystrophy (X-ALD) NBS Advisory Committee
• Spinal Muscular Atrophy (SMA) NBS Advisory Committee

For more detailed information about the number of newborns screened and confirmed with disorders, please see the annual reports available on the NBS Resources for Hospitals and Health Professionals webpage. 

  Updated 8-15-2024

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