SERC | Southeast NBS & Genetics Regional Collaborative

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Professionals

The Southeast Newborn Screening & Genetics Regional Collaborative (SERC) is a federally-funded initiative dedicated to improving the health and quality of life of individuals with heritable disorders.  Providing professionals with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERC.  Below are links to information and resources specific to public health and medical professionals.

Personnel Directory
The regional directory of genetics and other related services provides comprehensive regional information about genetics services available within the region. This searchable database holds information for consumers, clinicians, and researchers.
Centers Directory
The regional directory of genetics and other related services provides comprehensive regional information about genetics services available within the region. This searchable database holds information for consumers, clinicians, and researchers.
SERC-DISCUSSION Mailing List
For discussion of genetics-related topics, with emphasis on the Southeast (Region 3) area. All are welcome to join and participate. Subscribe here.
Sample Exchange
The sample exchange is a peer-to-peer anonymous sample sharing program aimed at improving regional knowledge about TMS screened conditions and local data harmonization within the region; and evaluating the degree of analytical correlation between laboratories. Due to the sensitive nature of this program, only approved users have access to the database. If you are unable to gain access and believe that this is an error, please contact the system administrator for assistance.
Diagnostic Lab Test Data
The Diagnostic Lab test database is designed to help patients and clinicians in the southeast region find diagnostic laboratory services. We hope that by adding this to Southeast NBS & Genetics Collaborative, it gives patients a single resource for testing service sand helps them find labs in the event of a personal or general disaster. We also hope this information will help with general disaster planning.
SERC-ANNOUNCEMENT Mailing List
Join and be informed of upcoming events, news and other pertinant information. Low volume mailing list. Subscribe here.
Nutrition Guidelines Portal
The Nutrition Guideline project develops nutrition guidelines for the management of genetic metabolic disorders using both evidence-based and consensus-based methods. The completed guidelines will be published on both the SERC and GMDI websites.
Medical Foods Survey
The Medical Foods Survey was created to assess the gaps in legislation for coverage of medical foods (formula), modified low-protein foods, and nutraceuticals across the US, as well as other methods of coverage used in each state. Methods of obtaining these items and detailed statements of exclusions of coverage were also collected. This data was gathered through phone interviews with state representatives and clinicians and has been summarized in the regional and state summary sheets.
State Genetics Plans
Information about Region 3 state genetics plans.
Publications
List of publications generated through SERC activities.
Video Presentations
Selected video presentations from Lunch and Learn series and SERC conferences.
Nutrition Symposium
Summary of the annual Nutrition Symposium.

Last Modified: Jun 21, 2011

News
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey ParticipationResearch OpportunityResearchers with SERC Medical Home & Transitioning Workgroup and SERC Consumer Alliance are are recruiting individuals ages 25-35 (and/or…

Limestone Life article highlights PKU (Athens, AL)
Limestone Life article highlights PKU (Athens, AL) Athens, AL based magazine Limestone Life features an article in their latest edition about Adam and Julie Tucker and their…

SERC Events
<< << February 2017 >> >>
S M T W T F S

SERC Highlights
February 2017

Introducing the NBS Connect patient registry!

Introducing the NBS Connect patient registry!

NBS Connect http://nbsconnect.org has been designed as a resource for those affected by certain disorders included in the newborn screening (NBS) panel. Extensive development of the registry will occur via a phased approach. The registry was launched with NBS-PKU Connect for Phenylketonuria, then NBS-MSUD Connect for Maple Syrup Urine Disease. The next phase is now available with. NBS-TYR Connect for Tyrosinemia. Expansion of the registry will continue to include other disorders in the recommended uniform screening panel (RUSP), endorsed by the American College of Medical Genetics (ACMG)

We encourage patients affected with PKU, MSUD and Tyrosinemia to visit the website at www.nbsconnect.org , register and complete their participant profiles. Participants will have access to disorder specific education materials, information on the latest research and clinical trials, recipes, interactive health tracking systems, “Ask an Expert” tools and more. We hope you will take advantage of the resources provided which will empower you to make more informed healthcare decisions.

This registry will be an asset both for forming connections between consumers and for building a qualitative database for future research.

If you have any questions, please email the project manager Yetsa Osara at coordinator@nbsconnect.org.

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