National Birth Defects Prevention Network

National Birth Defects Prevention Network The NBDPN is a volunteer-based organization that addresses the issues of birth defects surveillance, research and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs.
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Members include public health officials, epidemiologists, academics, parents, and others committed to understanding factors that may lead to birth defects, identifying strategies for reducing birth defects, and working to prevent potential secondary disabilities. The NBDPN assesses the impact of birth defects upon children, families, and health care; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in secondary disabilities prevention. To fulfill its mission, the Network pursues the following goals: -Improve access and application of information about the prevalence and trends of birth defects. -Increase collaboration between members within the birth defects community. -Advance science through birth defects surveillance and its application to public health efforts and resource allocation. The objectives of the NBDPN are to: -Improve the quality of birth defect surveillance data. -Promote scientific collaboration for the prevention of birth defects. -Provide technical assistance for the development of uniform methods of data collection. -Facilitate the communication and dissemination of information related to birth defects. -Collect, analyze, and disseminate state and population-based birth defect surveillance data. -Encourage the use of birth defect data for decisions regarding health services planning (secondary disabilities prevention and services).

Operating as usual

The scientific and ethical questions concerning when and how to include pregnant women in clinical trials are complex.  ...
12/27/2020
Scientific and Ethical Considerations for the Inclusion of Pregnant Women in Clinical Trials

The scientific and ethical questions concerning when and how to include pregnant women in clinical trials are complex. This upcoming symposium sponsored by Duke University and the FDA will take a close look and hopefully yield some valuable answers. https://healthpolicy.duke.edu/events/scientific-and-ethical-considerations-inclusion-pregnant-women-clinical-trials

Pregnant women have historically been excluded from clinical trials for new and existing therapeutics, but many women still use medically necessary drugs during the course of pregnancy.[1] Clearer scientific understanding of the risks and benefits associated with the use of medications during pregna...

Eunice Kennedy Shriver National Institute of Child Health and Human Development
12/22/2020
Eunice Kennedy Shriver National Institute of Child Health and Human Development

Eunice Kennedy Shriver National Institute of Child Health and Human Development

Pregnant women who are infected with SARS-CoV-2, the virus that causes #COVID19, during the third trimester are unlikely to pass the infection to their newborns, suggests a study funded by the National Institutes of Health. Learn more: bit.ly/2WFesBs. Massachusetts General Hospital Harvard Medical School #MaternalHealth

The NBDPN annual resource and information packet for January's National Birth Defects Prevention Month observance includ...
12/14/2020
National Birth Defects Prevention Month - National Birth Defects Prevention Network

The NBDPN annual resource and information packet for January's National Birth Defects Prevention Month observance includes engaging video summaries in English and Spanish. See them and the entire packet at https://www.nbdpn.org/bdpm.php. We hope you will use our packet to plan how you and/or your organization can spread the word that many birth defects can be prevented, and that those that do occur can often be effectively treated to prevent secondary complications and assure the best possible outcomes when detected early.

The NBDPN is a volunteer-based organization that addresses the issues of birth defects surveillance, research, and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs.

This webinar is starting soon, but will also be archived a few hours after it is completed, as noted below.  There are a...
12/14/2020
2020 COCA Calls/Webinars Information, Summaries, & Slide Sets

This webinar is starting soon, but will also be archived a few hours after it is completed, as noted below. There are also many valuable previous COCA webinars available as well.

TODAY, December 14th, 2020, at 1 PM: CDC Clinician outreach and Communication Activity (COCA) call - What Every Clinician Should Know about COVID-19 Vaccine Safety

Monitoring vaccine safety is a vital part of the nation’s response to the COVID-19 pandemic. As COVID-19 vaccines become available, the public’s knowledge and confidence in their safety, both initially and during extended use, is an important part of a successful national vaccination effort. CDC remains committed to ensuring that public health officials, healthcare providers, and the public have accurate and timely information on the safety of COVID-19 vaccines.

During this COCA call, clinicians will learn how they can educate their patients on what to expect after COVID-19 vaccination. In addition, they will learn how they can play an important role in monitoring the safety of COVID-19 vaccines, including encouraging patients to enroll in v-safe and to use v-safe to report how they’re feeling. Clinicians also will learn how to report adverse events (possible side effects) to the Vaccine Adverse Event Reporting System (VAERS).

If you are unable to attend the live COCA Call, the recording will be available for viewing on the COCA Call webpage (https://emergency.cdc.gov/coca/calls/2020/index.asp) a few hours after the live event ends.

The slide set will be available under "Call Materials" on the COCA Call webpage (https://emergency.cdc.gov/coca/calls/2020/index.asp).

Continuing Education (CE) will not be offered for this COCA Call.

Date: Monday, December 14, 2020

Time: 1:00 P.M. - 2:00 P.M. (ET)

A few minutes before the webinar starts, please click on the Zoom link below to join: https://www.zoomgov.com/j/1611264903

Or iPhone one-tap:

US: +16692545252,,1611264903# or +16468287666,,1611264903#

Or Telephone: Dial (for higher quality, dial a number based on your current location): US: +1 669 254 5252 or +1 646 828 7666

Webinar ID: 161 126 4903

International numbers available: https://www.zoomgov.com/u/aegQx7b7up

Advanced registration is not required.

Title: Making Practical Decisions for Crisis Standards of Care at the Bedside During the COVID-19 Pandemic Date: Thursday, December 17, 2020

The 2021 National Birth Defects Prevention Month (NBDPM) information and resource packet is ready to help you plan how y...
12/09/2020

The 2021 National Birth Defects Prevention Month (NBDPM) information and resource packet is ready to help you plan how you and your organization can increase awareness of ways to prevent birth defects during the month of January. This year's packet is a continuation of last years "Best for You, Best for Baby" theme with some great new resources. You can access the PDF of the packet at https://www.nbdpn.org/docs/Theme_Resources_2021.pdf, or access the packet and accompanying resources at going to the NBDPN.org website and click on the "2021 Birth Defects Prevention Month" link and scrolling down to "Best for You, Best for Baby."

Avoiding food borne infections is an important part of assuring a healthy pregnancy.
12/05/2020

Avoiding food borne infections is an important part of assuring a healthy pregnancy.

CDC and partners continue to investigate the source of a Listeria outbreak linked to deli meat. If you are pregnant, aged 65 years or older, or have a weakened immune system, CDC always advises that you avoid eating deli meat unless it’s heated to an internal temperature of 165°F or until steaming hot just before serving. Because deli meats can have Listeria bacteria, CDC advises this even when there are no ongoing outbreaks. https://go.usa.gov/x7gcp.

Masks help. Distance helps.  Hand washing helps.  The three together might just keep you and your loved ones well.
11/21/2020

Masks help. Distance helps. Hand washing helps. The three together might just keep you and your loved ones well.

A new CDC report finds that after Kansas put in place a mask mandate in July 2020, the rate of new COVID-19 cases decreased in counties with a mask requirement and increased in counties where masks were not required. Take steps to slow the spread of COVID-19 by wearing a mask that covers your nose and mouth, staying 6 feet apart from others, washing your hands often, and avoiding gatherings. Learn more: bit.ly/MMWR112020b.

Today, November 17th, is World Prematurity Day.  It is a good time to remember that a baby with a birth defect is at inc...
11/17/2020
Premature Birth

Today, November 17th, is World Prematurity Day. It is a good time to remember that a baby with a birth defect is at increased risk of prematurity. All aspects of maternal health and perinatal care are important in lowering the number of babies born prematurely. Preventing birth defects is an important step in preventing premature births.
https://www.cdc.gov/reproductivehealth/features/premature-birth/

Learn about the problem, risk factors, and what we can do to reduce premature birth.

Today, as we observe World Prematurity Day, it is important that we in public health recognize the role of the underrepr...
11/17/2020
Why Is Maternal Health So White? A Look at the Underrepresentation of People of Color in Maternal Health Research and Practice

Today, as we observe World Prematurity Day, it is important that we in public health recognize the role of the underrepresentation of minority academics and healthcare professionals in public health and specifically in maternal/child health as a factor leading to the greater prevalence of premature births in women who are black or mixed race. NBDPN is currently working to assure that our annual Birth Defects Prevention Month packets do a better job of providing effective information for people of all ethnic backgrounds. If you would like to be part of this effort, please consider joining one of our working committees.

In the past year, the murders of Ahmaud Arbery, Breonna Taylor, and George Floyd have galvanized a long-overdue reckoning with institutional racism in the U.S. We know that systemic oppression of B…

Participating in research surveys is a way to actively advance the understanding of effective interventions to improve t...
11/11/2020

Participating in research surveys is a way to actively advance the understanding of effective interventions to improve the lives of those living with Down syndrome.

If you have a child ages 1-5 years, you may be eligible to complete a brief (~15 minute) survey and help us understand what your child’s daily routines look like in the areas of eating, activity and sleep. You can complete the FaB Health Survey here for the Pediatric Health Promotion Lab at the University of Pittsburgh at this link.
https://www.ctsiredcap.pitt.edu/redcap/surveys/?s=YRMHY4EREL

11/11/2020
Antiepileptic Drug (AED) Pregnancy Registry

Antiepileptic Drug (AED) Pregnancy Registry

November is Epilepsy Awareness Month! Every month, this Registry strives to answer the Q’s that surround taking antiepileptic medication during pregnancy. With your help, we can continue to find answers. Consider joining us! www.aedpregnancyregistry.org #AEDRegistry #NEAM2020

CDC
11/10/2020

CDC

In a new CDC study, flu illness was shown to be associated with increased risk of poor pregnancy outcomes, including lower birth weight and late pregnancy loss. A flu vaccine during pregnancy is an important step in protecting mother and baby from flu illness. Read more: https://bit.ly/36hOMz3 .

Society for Birth Defects Research and Prevention
11/10/2020

Society for Birth Defects Research and Prevention

Our sister society MotherToBaby publishes in our Birth Defects Research Journal several recommendations specific to the Zika virus outbreak. Wiley Genetics Wiley Health https://onlinelibrary.wiley.com/doi/10.1002/bdr2.1787

If you have a child between 6 and 12 years- old with Down syndrome, consider joining this focus group session.
10/27/2020

If you have a child between 6 and 12 years- old with Down syndrome, consider joining this focus group session.

Join Dr. Stephanie Santoro for a virtual focus group to discuss the concept of health for Down syndrome. The goal is to create a validated survey that will directly assess health in individuals with Down syndrome.

If you are a caregiver of an individual with Down syndrome ages 6-12, please fill out this eligibility questionnaire: https://is.gd/FocusGroupInterest

For more information, please see the attached flyer. Thank you!

Access to care before and during pregnancy can reduce the incidence of birth defects and secondary complications from bi...
10/27/2020
Maternity Care Deserts Report

Access to care before and during pregnancy can reduce the incidence of birth defects and secondary complications from birth defects. Yet, as this March of Dimes report highlights, many women have little or no access simply because of where they live.

March of Dimes leads the fight for the health of all moms and babies. We use research, advocacy, and education to give every baby the best possible start.

Early detection of developmental delays can help to assure the best long term outcome for your child.
10/25/2020

Early detection of developmental delays can help to assure the best long term outcome for your child.

Your child’s health is more than just physical. Track their developmental health and get tips for supporting their growth with CDC’s FREE Milestone Tracker app. Download it today! www.cdc.gov/MilestoneTracker.

Electronic cigarettes may not be a "safer alternative" of conventional cigarettes during pregnancy: evidence from the na...
10/17/2020
Electronic cigarettes may not be a "safer alternative" of conventional cigarettes during pregnancy: evidence from the nationally representative PRAMS data - PubMed

Electronic cigarettes may not be a "safer alternative" of conventional cigarettes during pregnancy: evidence from the nationally representative PRAMS data - PubMed

Even after accounting for shared risk factors between prenatal tobacco use and adverse birth outcomes, EC use remains an independent risk factor for neonatal complications and is not a safer alternative to CC smoking during pregnancy. Until further research is completed, all pregnant women are encou...

Today, October 5, 2020 (the first Monday in October) is National Child Health Day.  It is a day to remember that the hea...
10/05/2020
NATIONAL CHILD HEALTH DAY – First Monday in October

Today, October 5, 2020 (the first Monday in October) is National Child Health Day. It is a day to remember that the health of the next generation is first determined by the health of today's children. Assuring good nutrition, up-to-date vaccinations, and development of lifestyle habits that lead to maintenance of a healthy weight throughout childhood and the reproductive years are our most important steps in reducing the risk of birth defects going forward. Part of good nutrition is making sure that every teenage girl and every woman of reproductive age knows the value of taking a daily vitamin supplement containing the equivalent of 400 mcg of folic acid, in addition to consuming a diet rich in natural folates to prevent birth defects.
https://nationaldaycalendar.com/national-child-health-day-first-monday-in-october/

NATIONAL CHILD HEALTH DAY In the United States, National Child Health Day occurs each year on the first Monday in October. The day recognizes the care and guidance children need to grow strong and healthy. Each child deserves to be the healthiest he or she can be. From the food they eat to the words...

Issues pertaining to the safety of CBD products may be particularly important to address in women. In addition, use of C...
09/29/2020
CBD and Other Cannabinoids: Sex and Gender Differences in Use and Responses

Issues pertaining to the safety of CBD products may be particularly important to address in women. In addition, use of CBD and other cannabinoids during pregnancy is an important public health concern that will be highlighted at this scientific conference from the FDA. https://collaborationcqpub1.fda.gov/content/connect/c1/7/en/events/event/shared/default_template/event_registration.html?_charset_=utf-8&sco-id=194489245&utm_medium=email&utm_source=govdelivery

If you've never used Adobe Connect, get a quick overview: http://www.adobe.com/products/adobeconnect.html Adobe, the Adobe logo, Acrobat and Adobe Connect are either registered trademarks or trademarks of Adobe Systems Incorporated in the United States and/or other countries.

It is not too late to earn CME's from the 2020 Annual Meeting of the Society for Birth Defects Research and Prevention (...
09/26/2020
2020 Society for Birth Defects Research and Prevention Annual Meeting Program Highlights

It is not too late to earn CME's from the 2020 Annual Meeting of the Society for Birth Defects Research and Prevention (BDRP - formerly the Teratology Society). https://www.birthdefectsresearch.org/meetings/2020/continuing-medical-education.asp?fbclid=IwAR3njhjsRBxzXLwITJ0lvOzsIsbDIX351XUP4WwkNFJCDg7RHpn7-hEPK5M

The exposures in pregnancy scientific program represents research of high relevance to public health professionals and scientists alike.

BDR Connection : Blogs : Dr. Godfrey Oakley to discuss his life and career in spina bifida research and prevention in th...
09/26/2020
BDR Connection : Blogs : Dr. Godfrey Oakley to discuss his life and career in spina bifida research and prevention in the Unites States and globally in special virtual event, Saturday, October 3

BDR Connection : Blogs : Dr. Godfrey Oakley to discuss his life and career in spina bifida research and prevention in the Unites States and globally in special virtual event, Saturday, October 3

A conversation with Dr. Godfrey P. Oakley Jr. about his life and career in spina bifida research and prevention in the Unites States and globally. Dr. Oakley will also discuss his current work as the Director for the Center for Spina Bifida Research and Prevention at Emory University Rollins School....

MassGeneral Hospital Down Syndrome Program
09/22/2020

MassGeneral Hospital Down Syndrome Program

Researchers at University of Delaware’s Innovation Health and Design Lab are investigating the clothing requirements of children with Down syndrome aging between birth and 14 years old. If you are a parent or caregiver of a child with Down syndrome in this age range, please consider taking this short survey by clicking this link:
https://delaware.ca1.qualtrics.com/jfe/form/SV_38D3XcMRnpHoyP3

CDC
09/16/2020

CDC

Pregnant? Talk to your obstetrician or midwife about getting a whooping cough vaccine, called Tdap, during your third trimester. You’ll boost your own antibodies and pass important protection to your baby before birth. Learn more:
https://bit.ly/3mnJw42.

"When a pregnant woman drinks alcohol, so does her baby". You can embed this statement on your webpage by using the foll...
09/09/2020
www.cdc.gov

"When a pregnant woman drinks alcohol, so does her baby".

You can embed this statement on your webpage by using the following source code.

09/09/2020
www.cdc.gov

Looking for a good patient/client handout about alcohol use in pregnancy? Check out this PDF from CDC.gov. A good question to accompany this information is "On what day of development are you willing to risk a problem with your baby's developing brain and organs?" https://www.cdc.gov/ncbddd/fasd/documents/FASDBrochure_final-P.pdf

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This course is an opportunity for all infertility specialists, obstetricians and gynaecologists to enhance their techniques in diagnosis and treatment For more details visit https://bit.ly/2IAtajR
What criteria has your state used for adding/deleting conditions to your registry? Wisconsin criteria. A Birth defect should: • Conform to the statutory definition of a birth defect – a structural deformation, disruption or dysplasia, or a genetic, inherited, or biochemical disease that occurs prior to or at birth. • Usually be identifiable by 2 years of age . • Be a major anomaly (having medical, surgical or developmental significance). • Be of ‘sufficient’ frequency (birth prevalence) – an estimated prevalence of 1/30,000 births.
Hi,I wanted to hear from states if they developed criteria used to determine what birth defects they enter into their registry. Due to statute changes, WI can be more flexiable. Current WI Policy - a birth defect should: • Conform to the statutory definition of a birth defect – a structural deformation, disruption or dysplasia, or a genetic, inherited, or biochemical disease that occurs prior to or at birth. • Usually be identifiable by 2 years of age (the limit of the statute). • Be a major anomaly (having medical, surgical or developmental significance). • Be of ‘sufficient’ frequency (birth prevalence) – an estimated prevalence of 1/30,000 births was selected; this would mean that 2 or more occurrences each year in Wisconsin would be expected, and be consistent as possible with data being collected elsewhere in the country. In addition, the list does not include most conditions identified by current newborn screening since ascertainment of these is virtually complete anyway. Thanks for your responses and help. Please reply to: [email protected] if you have such a policy.
Protect the pregnancies of childcare providers/volunteers: https://www.facebook.com/nationalcmv/posts/986541968166490
For all involved in some aspect of research, here is a newsflash from "Kids First 2.0": The Kids First program would like to share with you a funding opportunity in the area of Birth Defects research supported by the Centers for Disease Control and Prevention. Notice of Funding Opportunity (NOFO) #RFA-DD18-001: Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) II was published/announced on 12/21/2017. If interested in applying, please check the website (https://www.grants.gov/web/grants/search-grants.html) for the full NOFO description and application documents. The opportunity number and link to the NOFO is below as well. Please note this is not an NIH or Kids First program funding opportunity. Opportunity title: Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) II Opportunity number: CDC-2018-FCAST-0118 Link: https://www.grants.gov/web/grants/view-opportunity.html?oppId=297928
It's CMV awareness month! Could you please post about the most common congenital infection?
Can you sharesome information on congenital CMV since June is CMV Awareness Month?