SERN | Southeast NBS & Genetics Regional Collaborative

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Medical Home and Transitioning Workgroup

Overview

Newborn screening programs often struggle to track individuals and coordinate care. Coordination of care can be especially difficult because of the varying availability of specialists (e.g., geneticists and other pediatric subspecialists, genetic counselors, and nutritionists) and generalists who are able to participate in often complex care.  The overarching goal of this project is to improve the process of newborn screening by developing innovative approaches to strengthen the linkages between newborn screening programs, families, and child health care providers and to increase the number of child health care providers that can provide a "medical home" for those diagnosed with a disorder.

 

Hematology

The Hemoglobinopathies Workgroup was established to focus attention on the special health care needs of those suffering from Sickle Cell Disease and related disorders. A primary focus of this workgroup is on the care of individuals as they "transition" from childhood into adulthood. The transition of children with special health-care needs is an emerging problem resulting from the marked improvement in the survival of children with chronic illnesses due to improved pediatric health care.

 

Transitioning

Due to improvements in medical care and advances in technology, children with heritable disorders are now reaching adulthood and giving birth to their own children. Unfortunately, the health care field has failed to grow with them and bridge their transition to adult health care, ultimately failing to deliver appropriate and necessary follow-up care.

The Transitioning Workgroup was formed out of the recognition of the importance of continuity of care during the transition from pediatric to adult health care. Its aim is to educate patients and professionals to ensure current and accurate knowledge about regional genetic services and to improve the quality of health of those with heritable disorders as they transition from childhood into adulthood.

Membership

Alex Kemper, MD (Co-chair)

Jim Eckman, MD (Co-chair)

Ify Osunkwo, MD

Resources/Activities

Sickle Cell Information Center - The mission of this site is to provide sickle cell patient and professional education, news, research updates and world wide sickle cell resources.

 

SERN Highlights
June 2017

2017 Annual Meeting for SERN/SERGG - July 20-22 in Asheville, NC

2017 Annual Meeting for SERN/SERGG - July 20-22 in Asheville, NC

The next annual SERC/SERGG meeting will be held July 20-22, 2017 at Renaissance Asheville Hotel in Asheville, NC.

More information available on the SERGG website: http://sergg.org/

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