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Resources and Follow-Up

Online Resources

Provides sickle cell patient and professional education, news, research updates, and world wide sickle cell resources.
Provides information regarding the clinical, laboratory, and research services offered by the center.
Contains hemoglobin fact sheets and information regarding services offered by the Foundation.
A Parent Resource on Newborn Screening. Provides information for parents, disease descriptions, information regarding screening in other states, a resource library, family stories, and much more.
Provides information and its recommendations regarding newborn screening.
Contains newborn screening fact sheets and other policy statements.
A global, nonprofit, standards-developing organization that promotes the development and use of voluntary consensus standards and guidelines within the healthcare community. National Newborn Screening and Genetics Resource Center (NNSGRC).
Provides newborn screening and genetics information and resources to benefit health professionals, the public health community, consumers and government officials.
A genetics information resource for healthcare providers and parents.
The information site for patients and physicians regarding laboratory testing and clinical genetics services offered through the Department of Human Genetics at Emory University.
A Guide for patients and families.
A Guide for Parents.
A federation of non-profit voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Provides a database of over 1000 rare disorders and their support groups.
The website for a multi-state collaborative project that will address the financial, ethical, legal and social issues (FELSI) surrounding the use of MS/MS for neonatal metabolic screening.

Cystic Fibrosis Resources

Support Groups

 

Follow-Up

The primary function of the follow-up component is to locate infants with positive screening results and to facilitate the entry of these infants into the diagnostic and management components of the NBS system in a timely fashion.

This section identifies the organizations responsible for follow-up of abnormal screening results and describes their role within the newborn screening system.

Emory University School of Medicine

Abnormal results for the metabolic and endocrine disorders are reported by the Georgia Public Health Laboratory to the newborn screening follow-up program at Emory University Division of Medical Genetics. Program staff is responsible for reporting abnormal results to the appropriate health care provider, aiding in the location of the newborn with an abnormal screen, and making recommendations for follow-up testing. Additionally, follow-up staff coordinates confirmatory testing and ensures that all diagnosed newborns are referred to the appropriate specialist for treatment and long-term management. Medical geneticists and the Metabolic Nutrition Program are responsible for providing medical and nutritional treatment and management for the metabolic patients. Emory Genetics Laboratory is also available to provide genetic laboratory testing and clinical genetic services.

Emory University School of Medicine
Department of Human Genetics
Division of Medical Genetics
Newborn Screening Follow-up Program: (404) 778-8560
Metabolic Nutritionist: (404) 785-6000
Geneticist-on-Call (pager for nights and weekends): (404) 785-6000

Sickle Cell Foundation of Georgia, Inc

The Sickle Cell Foundation of Georgia, Inc. is responsible for follow-up of abnormal hemoglobin results that suggest carrier, or "trait" status. Foundation staff contacts families and offers family testing and counseling. Additionally, the Foundation serves as a specimen collection site for confirmatory testing of clinically significant hemoglobin disorders.

Sickle Cell Foundation of Georgia
(404) 755-1641 or 1-800-326-5287 (toll free)

Georgia Regents University Hospital

The follow-up of abnormal results that suggest actual hemoglobin disease are divided between the Division of Pediatric Hematology/Oncology at the Georgia Regents University Hospital in Augusta and the Georgia Department of Public Health Newborn Screening Unit in Atlanta.

Program staff is responsible for reporting abnormal results to the appropriate health care provider, aiding in the location of the newborn with an abnormal screen, and coordinating confirmatory testing. Additionally, they ensure that all diagnosed newborns are referred to the appropriate specialist for treatment and long-term management. The Pediatric Sickle Cell Clinic and the Adult Sickle Cell Clinic at the Georgia Regents University Hospital, as well as its outreach clinics, provide comprehensive care for pediatric and adult patients.

The Titus H.J. Huisman Hemoglobinpathy Laboratory at the Georgia Regents University Hospital is an international testing and reference center for sickle cell disease, thalassemia and other hemoglobin disorders. The laboratory, one of few in the country that study abnormal hemoglobins, is a resource for researchers and clinicians throughout the country and beyond.

Georgia Regents University Hospital
Department of Pediatrics
Division of Pediatric Hematology/Oncology
Pediatric Sickle Cell Clinic
NBS Program Coordinator: (706) 721-6251
On-call MD: (706) 721-3893

Division of Public Health, Newborn Screening Unit

The follow-up of abnormal results that suggest actual hemoglobin disease are divided between the Division of Pediatric Hematology/Oncology at the Georgia Regents University Hospital in Augusta, and the Georgia Department of Public Health, Newborn Screening Unit in Atlanta.

Program staff is responsible for reporting abnormal results to the appropriate health care provider, aiding in the location of the newborn with an abnormal screen, and coordinating confirmatory testing. Additionally, they ensure that all diagnosed newborns are referred to the appropriate specialist for treatment and long-term management. The Georgia Comprehensive Sickle Cell Center at Grady Health System is the world's first 24-hour adult comprehensive primary care clinic for patients with sickle cell syndromes. Clinical staff serves as medical consultants to the Newborn Screening Program.

Newborn Screening Unit
Georgia Department of Public Health
NBS Program Coordinator: (404) 657-2882

Grady Health System

Georgia Comprehensive Sickle Cell Center
Grady Health System
On-Call MD: (404) 616-3572