Archive for June, 2009

Jun 16 2009

National Birth Defects Prevention Network (NBDPN) pleased to offer webinar session on “Genetic Testing and Screening: Implications for Birth Defects Programs”

Published by under Announcements

The National Birth Defects Prevention Network (NBDPN) is pleased to offer a webinar session on *Genetic Testing and Screening: Implications for Birth Defects Programs*

All individuals who are members of the National Birth Defects Prevention Network, employees of birth defects program, birth defects researchers, individuals who collect data from medical records or who code birth defects data are encouraged to register.

The presentation aims to help describe the testing for chromosomal abnormalities being used in a clinical setting to diagnose the cause(s) of birth defects, to understand the nomenclature used to report normal or abnormal test results, and to differentiate the relevant test results to be abstracted from a medical record for a birth defects surveillance program.

*PRESENTER :* Stuart Shapira, MD, PhD
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities, CDC

*DATE: *Thursday, June 25, 2009 at 3:00-4:15PM (EST) / 12:00-1:15PM (PST)

All presentations during the meeting will be broadcast live via Net Conferencing. Additionally, there will be a limited question/answer period that participants will be able to join. Handouts will be made available prior to as well as during the sessions.

*TO REGISTER, go to*:

Registration is FREE but the number of webinar connections is LIMITED. To maximize the number of participants, it would be optimal for multiple participants to view the webinar using one connection. Registration is first come first serve, so remember to register early!

For those who will be* sharing a connection*, each individual participant is asked to individually register. Please identify one contact person for your group to receive the connection information and for technical purposes. (There’s a place on the registration form to include this information.)

Continuing education for this activity is pending. Please see final announcement for specific details.

*QUESTIONS:* Contact Miland Palmer at or Cara Mai

No responses yet

Jun 12 2009

Congenital Conditions Program RFA

Published by under Announcements,General

HRSA recently released an RFA as part of the implementation of the Prenatally and Postnatally Diagnosed Conditions Awareness Act (PPDCAA). This cooperative agreement is for one award of $820,000 per year for three years.

The purpose of RFA is to:

  1. Increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions;
  2. Strengthen existing networks of support through outreach programs;
  3. Improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions;
  4. Ensure that patients receive information about the accuracy of the diagnostic tests for the conditions;
  5. Establish or increased access to a resource hotline.

Applicants must have capability and capacity to coordinate activities among the relevant stakeholders and initiate activities at the state, regional, and national level. I see this as essentially a national resource center.

For more information, go to:

No responses yet

Jun 12 2009

Testing Health Messages about EGAPP

Published by under Announcements

HTML clipboardThe Centers for Disease Control Office of Public Health Genomics is in the process of developing a survey to test health messages that will be part of some “translation products” they are developing. These messages will be used to inform health care providers about the new genetic testing recommendations by the Evaluation of Genomic Applications in Practice and Prevention (EGAPP) workgroup.

The Office of Public Health Genomics is looking for health care providers who can participate in a two-hour phone interview. The type of providers that they would like to interview include:

  1. Genetic counselors
  2. General practitioners
  3. Oncologists
  4. Nurse practitioners
  5. Physician Assistants

Participants do not need to have knowledge or expertise in genetics or genomics, and do not need to know anything about the EGAPP recommendations. Participants will receive a small token of thanks.

  • To read the EGAPP recommendation, visit the EGAPP website at:
  • To participate in the interviews, or if you have questions about the project, contact:

    Jeanette St. Pierre, MPH, MA, team leader
    Health communication officer
    Office of Public Health Genomics
    Centers for Disease Control and Prevention
    1825 Century Blvd, Suite 1000
    Atlanta, Georgia 30345
    Phone: 404/498-0088
    FAX: 404/498-0140

No responses yet