Archive for the 'Announcements' Category

Jul 08 2016

NCC Collaborator- July 2016 Edition Now Available!

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The July edition of the NCC Collaborator is available! This edition of the NCC Collaborator f.  To view the focuses on consumer engagement and family advocate involvement throughout the different regions. To vie this issue, click here.

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Jun 06 2016

Mark your calendars for the 2016 Regional Summit in Seattle, WA from September 26-27

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This year’s WSGSC Regional Summit will be held at the Seattle Public Library.  Please mark your calendars for September 26-27, 2016.  Pauline will be contacting our stakeholders in August to start travel coordination.

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Jun 06 2016

Regional Genetic Services Support Model Recommendation Brief – NOW AVAILABLE!

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WSGSC provided consultation to the National Coordinating Center RSSM Work Group on the Regional Support Services Model Recommendation Brief to the Health Resources and Services Administration.  Thank you to the Collaborative partners who provided input and reviewed the draft report and submitted comments.  The final report is now available here.

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Apr 07 2016

Registration is open for the Advisory Committee on Heritable Disorders in Newborns and Children meeting May 9-10, 2016

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The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children will be held on May 9 and 10th, 2016. The meeting will be held at the 5635 Fishers Lane, Rockville, MD 20852. The meeting will also be webcasted.

Registration: The meeting will be open to the public with attendance limited to space availability.  Participants also have the option of viewing the meeting via webcast.  Whether attending in-person or via webcast, all participants must register for the meeting.  The registration link is https://blsmeetings.net/achdncMay2016/index.cfm. The registration deadline is Friday, April 29, 2016, 11:59 PM Eastern Time. For technical problems gaining access to the registration website, please email Paul Brown at pbrown@seamoncorporation.com

Agenda:  The Committee will hear presentations and discussions on topics including newborn screening long-term follow-up and prenatal education regarding newborn screening bloodspots.  The Committee will also review draft reports from the Pilot Study and Cost Analysis workgroups and hear updates from the Committee’s subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training.  Tentatively, the Committee is expected to review and/or vote on whether or not the nominated condition Guanidinoacetate Methyltransferase deficiency should be referred for a full evidence-based review.

Agenda items are subject to change as necessary or appropriate.  The agenda, webinar information, Committee Roster, Charter, presentations, and other meeting materials will be available on the Committee’s website at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

Public Comments:  Members of the public may present oral comments and/or submit written comments.  Comments are part of the official Committee record.  Advance registration is required to present oral comments and/or submit written comments. The registration link is https://blsmeetings.net/achdncMay2016/index.cfm.

The registration deadline for public comments is Friday, April 29, 2016 11:59 PM Eastern Time.  To ensure that all individuals who have registered to make oral comments can be accommodated, the allocated time may be limited.  Individuals who are associated with groups or have similar interests may be requested to combine their comments and present them through a single representative.  No audiovisual presentations are permitted.

Written comments must be received by the deadline of April 21, 2016 11:59PM Eastern Time in order to be included in the May meeting briefing book. Written comments should identify the individual’s name, address, email, telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.), and the topic/subject matter of comments.

Contact Person:  For additional information or questions on public comments, please contact Alaina Harris, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18W66, 5600 Fishers Lane, Rockville, Maryland 20857; email: aharris@hrsa.gov.

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Feb 08 2016

Baby’s First Test Applications for the 2016 Consumer Task Force on Newborn Screening: Full Proposals due by 6:00 p.m. EDT, February 10, 2016

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Baby’s First Test is requesting applications for the 2016 Consumer Task Force on Newborn Screening. This task force was created to engage relevant stakeholders with an interest in newborn screening policies, activities, and current events. This program includes training on issues relevant to newborn screening and project development targeting groups who typically are under-informed about the importance of newborn screening.  Task Force members will gain the skills and knowledge to work on newborn screening programs and other maternal and child health-related issues. Baby’s First Test is seeking Consumer Task Force members with a desire to learn about and to make a positive impact in newborn screening and maternal and child health.  No experience is necessary.

Please click HERE for the application.

Again, the deadline for receipt of full proposals is 6:00 p.m. EDT on February 10, 2016.

All inquiries regarding the Consumer Task Force should be submitted to Natasha Bonhomme at Natasha@BabysFirstTest.org.

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Jan 26 2016

Regional Support Service Model Webinars – Register NOW

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The NCC Regional Support Service Model Workgroup has created a draft recommendation, to be submitted to the Health Resources Service Administration (HRSA) that identifies current gaps and barriers in genetic services and proposes solutions to these issues for 2017 and beyond. The draft recommendations, as well as instructions on how to submit comments, will be available starting February 1st and open through February 26th.
As a part of the comment period, three webinars will be hosted in the beginning of February to inform a wide variety of stakeholders of the process undertaken the RSSM workgroup and to discuss the draft recommendations. Each webinar will be archived and available on this site immediately after the completion of the webinar.
To register for one of these webinars, please follow the link below
http://www.nccrcg.org/NCCRCG/Workgroups/Regional_Support_Service_Model/NCCRCG/Workgroups/Regional_Support_Service_Model_Workgroup/Recommendation.aspx

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Jan 26 2016

NCC Collaborator- January Edition

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The January edition of the NCC Collaborator is available! This edition of the NCC Collaborator shares the current work of the NCC/ RC system in related needs assessment activities, along with educational efforts.  To view the issue, click here.

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Aug 31 2015

NCC Collaborator-August edition

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The August edition of the NCC Collaborator is available! This issue describes updates on selected projects from each of the regional collaboratives. To view the issue, click here.

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Jun 29 2015

A Dialogue: Addressing and Paying for Genetic Services in Integrated Delivery Systems Webinar

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The archived webinar from the NCC-hosted meeting entitled, “A Dialogue: Addressing and Paying for Genetic Services in Integrated Delivery Systems” is now available: https://www.youtube.com/watch?v=J-ahldctaEM

Presentations from the meeting are also available: https://drive.google.com/folderview?id=0B92jjwNAkrLGfkVhM3llYzJ4TGVRQUxTeTUzZHJYUmU1OTdVb0FTVEZPcEYxcVp3WmMxRUE&usp=sharing

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May 13 2015

Pediatrics Article About the Estimated Number of Infants Detected and Missed by CCHD Screening

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The journal Pediatrics has published a new study estimating the number of infants with critical congenital heart defects (CCHDs) potentially detected or missed through universal screening for CCHDs using pulse oximetry. CDC researchers estimated that about 1,755 infants with critical CHDs would be diagnosed late (meaning on or after the third day after birth). Of these, about half (875 infants) with a critical CHD would be detected through newborn screening using pulse oximetry, but an equal number (880 infants) might still be missed each year in the United States. These findings might be useful for states and hospitals that are using pulse oximetry screening to help detect infants with undiagnosed critical CHDs. To read the full article, click here.

Main Findings:

  • About 5,965 infants were estimated to be born each year with a CCHD in the United States. Of those, about:
    • 1,800 infants would be diagnosed with a CCHD before they were born (prenatally diagnosed);
    • 2,410 infants would have a timely postnatal diagnosis (within 3 days of birth) of a CCHD, likely due to the onset of symptoms before undergoing newborn screening by pulse oximetry; and
    • 1,755 infants would have a “late” diagnosis (diagnosed on or after the third day after birth) of a CCHD.
  • About 875 of the 1,755 infants with a CCHD that are estimated to be at risk of late detection would be identified through CCHD screening using pulse oximetry, including about:
    • 110 infants with transposition of the great arteries;
    • 160 infants with tetralogy of Fallot; and
    • 315 infants with coarctation of the aorta or interrupted aortic arch.
  • Screening would not detect all infants with a CCHD at risk for late detection. About 880 of the 1,755 infants with a late diagnosed CCHD were estimated to be missed through CCHD screening using pulse oximetry, including about:
    • 245 infants with tetralogy of Fallot; and
    • 560 infants with coarctation of the aorta or interrupted aortic arch.
  • The effectiveness of CCHD screening using pulse oximetry depends on several factors, including:
    • the number of babies born each year with a specific CCHD type,
    • how many babies are diagnosed before birth, and
    • how well the screening technology can detect a specific type of CCHD.
  • Because of this, the majority of infants who can benefit from CCHD screening using pulse oximetry are those infants with coarctation of the aorta or interrupted aortic arch, tetralogy of Fallot, and transposition of the great arteries.
  • However, these are the same CCHD types that might not be detected with pulse oximetry screening.

 

 

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