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 six 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.
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
Children’s Hospital of Michigan - (313) 832-9330
The Children’s Hospital of Michigan Metabolic Clinic (CHMMC) coordinates follow-up for metabolic disorders on the newborn screening panel, including amino acid, organic acid, and fatty acid oxidation disorders, galactosemia, and biotinidase deficiency. The CHMMC and the Detroit Medical Center Biochemical Genetics Laboratory provide lifelong metabolic management for diagnosed patients, including confirmatory testing and interval laboratory monitoring. The metabolic management team staffs clinics in Detroit as well as satellite clinics in Grand Rapids, Southfield, and Canton. Outreach and educational efforts include family centered events focused on cooking and nutrition, a PKU family picnic, and publication of a semi-annual Metabolic Clinic Newsletter.
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, University of Michigan – (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.
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
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.