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

This is National Women's Health Week (May 9-15, 2021).  It is a good time to remember that a woman's overall pre-pregnan...
05/12/2021
About National Women’s Health Week

This is National Women's Health Week (May 9-15, 2021). It is a good time to remember that a woman's overall pre-pregnancy health is one of the most important factors in reducing the risk of infertility, pregnancy loss, prematurity, other complications of pregnancy, birth defects and developmental issues in offspring. The Office of Women's Health is emphasizing steps you can take right away to protect and improve your health. Each has the power to protect both you and to help assure healthy pregnancies in the future.

https://www.womenshealth.gov/nwhw/about

National Women's Health Week, led by the Office on Women's Health, empowers women to prioritize their health.

Va**ng of ma*****na extracts is alarmingly common among adolescents in the US and the reported use has approximately dou...
04/28/2021
Racial and Ethnic Differences in Ma*****na Use in e-Cigarettes Among US Youth in 2017, 2018, and 2020

Va**ng of ma*****na extracts is alarmingly common among adolescents in the US and the reported use has approximately doubled over 3 years and appears to be fairly equally distributed by gender. The message is clear that those of us concerned about maternal/child health need to double our work to spread awareness of the potential dangers of va**ng and of ma*****na use during pregnancy. https://jamanetwork.com/journals/jamapediatrics/fullarticle/2779396?guestAccessKey=07fe4718-2452-416d-9bb7-74ea71e75642&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=042621

This study reports the prevalence of ever use of ma*****na in e-cigarettes among US youth in 2020 and changes in prevalence from 2017 to 2020 by racial and ethnic groups.

If you are pregnant and are receiving a vaccine to prevent COVID-19, please ask about joining the V-Safe pregnancy regis...
04/23/2021
Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons | NEJM

If you are pregnant and are receiving a vaccine to prevent COVID-19, please ask about joining the V-Safe pregnancy registry to help speed up the accumulation of enough data to determine the benefits and risks of vaccination during pregnancy. This preliminary release of data based on a small number of completed pregnancies (827 out of almost 4000 registered pregnancies) indicates no safety signals that would suggest that the vaccine increases the risk of pregnancy complications. It is well established that unvaccinated pregnant women are at greater risk of severe disease and pregnancy complications from COVID-19.
https://www.nejm.org/doi/full/10.1056/NEJMoa2104983

Original Article from The New England Journal of Medicine — Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons

Congratulations to Dr. Peggy Honein who has accepted a new position serving as the Senior Scientific Advisor in the Divi...
04/16/2021
Director, Division of Birth Defects and Infant Disorders

Congratulations to Dr. Peggy Honein who has accepted a new position serving as the Senior Scientific Advisor in the Division of Preparedness and Emerging Infections in the Division of Preparedness and Emerging Infections in CDC's National Center for Emerging and Zoonotic Infectious Diseases.

With Peggy's departure from NCBDDD, a search is now underway for a new Director of the Division of Birth Defects and Infant Disorders. Job postings are below. Please share with those who you think would be interested.

https://www.usajobs.gov/GetJob/ViewDetails/598030100 (0601)
https://www.usajobs.gov/GetJob/ViewDetails/598030800 (0602)

This is an Excepted Service position under Title 42. Applications will be accepted from all groups of qualified persons, including Public Health Service Commissioned Corps officers. No previous federal experience is required. This appointment does not confer any entitlement to a position in the comp...

There are currently three NHS/CDC/NCBDDD funding grants for studies aimed at improving the lives of those with mobility ...
04/10/2021
Search Grants | GRANTS.GOV

There are currently three NHS/CDC/NCBDDD funding grants for studies aimed at improving the lives of those with mobility limitations and/or developmental or intellectual delays that are open for applications until May 11th or June 1st of 2021. If you or your organization are interested in applying, information on these grants can be accessed through the link below. https://www.grants.gov/web/grants/search-grants.html?keywords=CDC-RFA-DD21-2103&ACSTrackingID=USCDC_1054-DM54398&ACSTrackingLabel=NCBDDD%20Partner%20Alert%20-%204.8.2021&deliveryName=USCDC_1054-DM54398

CALL FOR MANUSCRIPTSNBDPN Annual Report - to be published in Birth Defects Research (BDR)The National Birth Defects Prev...
04/01/2021
Birth Defects Research

CALL FOR MANUSCRIPTS

NBDPN Annual Report - to be published in Birth Defects Research (BDR)

The National Birth Defects Prevention Network (NBDPN) will publish its annual national report on birth defects surveillance and prevention in the January 15, 2022 issue of BDR. Previous reports were published in Teratology (1997, 2000-2002); Birth Defects Research Part A (2003-2016); and most recently in Birth Defects Research (2017-2020). This annual report will consist of a series of articles relating to various issues in surveillance, epidemiology, and the application of surveillance data to birth defects prevention and public health programs, together with a data brief collaboratively developed by the NBDPN Data Committee. Annual statistical data from participating programs will be published on a biannual basis and will not be part of the NBDPN BDR issue.

Manuscripts will be peer-reviewed and approved under BDR guidelines. They should adhere to the guidelines for preparation and submission as outlined below. We are interested in manuscripts that utilize or evaluate birth defects surveillance data, use birth defects surveillance data in analytical epidemiological investigations or etiologic research, or apply these data to prevention or intervention programs. Manuscripts may come from a single state, or from collaborative efforts and activities including both multi-state and international collaborations. State-specific analyses of a specific birth defect or set of conditions should provide new observations or be hypothesis-driven with objectives and rationale for conducting the study that are clearly identifiable.

We are especially interested in manuscripts focusing on but not limited to the following areas:
• Epidemiologic studies to increase knowledge of risk/protective factors and etiology of specific birth defects
• Statistical techniques for cluster investigations, spatial analysis, novel applications of methods
• Statistical assessment (simple or complex) of birth defects rates and trends with new insights or observations, novel approaches to monitoring and analysis of trends
• Surveillance methodology for enhanced birth defects data ascertainment, data quality, and utilization
• Nationwide estimates pointing to the public health significance of birth defects
• Epidemiologic methods for birth defects research
• Using surveillance data to evaluate health promotion/birth defects prevention activities
• The effect that a specific intervention may have on the health care utilization, long-term outcomes, and survival of infants and children with specific birth defects
• Health services and outcomes research related to infants and children with birth defects using surveillance data
Please contact Dr. Russell Kirby (813-396-2347, [email protected]) or Dr. Marilyn Browne (518-402-7974, [email protected]) for more information or for a consultation on topics under consideration. Even if your idea falls outside the topical areas listed above, we would still like to discuss it with you.

Birth Defects Research’s Instructions to Authors can be found at the following website: http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)2472-1727/homepage/ForAuthors.html. We also request that each manuscript be accompanied by a cover letter including the name, address and telephone number or email address for at least two potential reviewers uninvolved with the current work who might be willing to provide an objective and unbiased review. Manuscripts should have internal clearance, if required for agency submission, and be submitted online at https://mc.manuscriptcentral.com/bdr by Friday, July 2, 2021. You must indicate in the note section that the manuscript is being submitted for consideration as part of the NBDPN Birth Defects Surveillance Report special issue.

Authors should kindly note that submission implies that the content has not been published or submitted for publication elsewhere except as a brief abstract in the proceedings of a scientific meeting or symposium.

"As is often the case for clinical trials of medications, pregnant people were excluded from the clinical trials for COV...
03/10/2021
BDR Connection : Blogs : COVID-19 and Pregnancy: A Journey from Social Media to Vaccines

"As is often the case for clinical trials of medications, pregnant people were excluded from the clinical trials for COVID-19 vaccines. However, given what is known about the safety of other vaccines during pregnancy and about how mRNA vaccines work, there is no reason to expect that these vaccines would pose a risk to the fetus. Therefore, several groups, including CDC, American College of Obstetricians and Gynecologists (ACOG), and the Society for Maternal-Fetal Medicine (SMFM) have come forward to say that pregnant persons who meet criteria for receiving COVID-19 vaccine may choose to receive the vaccine."

https://connection.birthdefectsresearch.org/p/bl/et/blogid=0&blogaid=1536&source=6

So much has changed in the past year – who could have predicted that terms like lockdown, herd immunity, and personal protective equipment (PPE) would become part of the general public’s vocabulary?! The same is true regarding what we know about COVID-19 and pregnancy. Looking back to a year ago...

It is time for all of us to seek in earnest to eliminate health disparities and systemic racism, including those that ex...
03/10/2021
Ending Structural Racism

It is time for all of us to seek in earnest to eliminate health disparities and systemic racism, including those that exist in the prevention, treatment, tracking and research of birth defects.
https://www.nih.gov/ending-structural-racism

Learn how UNITE is working to promote racial equity and inclusion at NIH and within the larger biomedical research community.

More than 8 million babies worldwide are born with a #birth defect each year. Today on #WorldBDDay, we join other organi...
03/03/2021

More than 8 million babies worldwide are born with a #birth defect each year. Today on #WorldBDDay, we join other organizations in raising awareness about birth defects. Learn more at www.worldbirthdefectsday.org

More than 8 million babies worldwide are born with a #birth defect each year. Today on #WorldBDDay, we join other organizations in raising awareness about birth defects. Learn more at www.worldbirthdefectsday.org

March is National Nutrition Month.  Sound nutrition throughout a woman's life, and particularly in the months before she...
03/01/2021
Healthy eating before having a baby

March is National Nutrition Month. Sound nutrition throughout a woman's life, and particularly in the months before she becomes pregnant can help to limit the risk of trouble conceiving and of a pregnancy affected by pregnancy complications or birth defects. Plan ahead to be at your nutritional best before you become pregnant. https://www.marchofdimes.org/pregnancy/healthy-eating-before-having-a-baby.aspx?gclid=Cj0KCQiAvvKBBhCXARIsACTePW-RnkNce1XTEdY7nCbM3klRx4GTP7pEAaW6ww0rdrpeKQNM40leOPUaAnlfEALw_wcB

Eating foods from the five food groups at every meal is very important. If you’re planning on getting pregnant eating foods that are healthy, whole and nutritious can have lots of benefits for you and your future baby.

Thanks to the Society for Birth Defects Research and Prevention for this great site for accessing webinars and social me...
02/26/2021
BDR Connection : Blogs : March 3 World Birth Defects Day Schedule of Events, Including Facebook Live with Dr. Sonja Rasmussen, #WorldBDDay Twitter Chat, and Two Webinars

Thanks to the Society for Birth Defects Research and Prevention for this great site for accessing webinars and social media events planned for World Birth Defects Day. https://connection.birthdefectsresearch.org/p/bl/et/blogid=4&blogaid=1533

World Birth Defects Day, which takes place every year on March 3 and is supported by 165 organizations worldwide, aims to use our collective voice to raise awareness for all birth defects and improve care and treatment.

World Birth Defects Day will be March 3rd, 2021.  WBDD.org has a toolkit to help you observe the day.  It contains sugge...
02/26/2021
World Birth Defects Day Toolkit – World Birth Defects Day

World Birth Defects Day will be March 3rd, 2021. WBDD.org has a toolkit to help you observe the day. It contains suggested activities, tools to help you spread awareness, and scheduled events to promote.
https://www.worldbirthdefectsday.org/world-birth-defects-day-toolkit/

World Birth Defects Day (WBDD) aims to use our collective voice in raising awareness for all birth defects and improve care and treatment (#manybirthdefects1voice). This 2021 World Birth Defects Day Toolkit has been developed to help you with your awareness activities.

With so many professional organizations making their annual conferences virtual this year, it is a great time to take ad...
02/25/2021

With so many professional organizations making their annual conferences virtual this year, it is a great time to take advantage of this opportunity to catch up on the latest research and developments without the burden of travel expenses. Many organizations are also keeping presentations available for some period of time to allow asynchronous access by those registered for conferences. The Massachusetts Down Syndrome Congress 37th Annual (Virtual) Conference is just one example you may want to consider.

Registration is now open for the Massachusetts Down Syndrome Congress’ 37th Annual Virtual Conference — Stronger Together: Creating Innovative Pathways for the Future —, which will take place on March 27th and 28th.

This year’s conference, which will be fully virtual, will spotlight innovative research on the horizon as well as timely updates related to Covid-19. We are proud to have some of our team members as presenters for this prestigious national conference and invite you to join us virtually!

Dr. Brian Skotko presents “Medical Updates for Children & Adolescents”
Dr. Stephanie Santoro presents “Medical Updates for Adults”
Kelsey Haugen & Kavita Krell present "Down Syndrome Clinic to You (DSC2U): A new virtual clinic for all families"

Register at https://mdscconference.org/ #mdscstrongertogether

02/22/2021

Staying as active as possible is important for everyone. Sharing regular exercise of all kinds with your special needs kids whenever possible is good for your health and theirs.

Save the Date: March 3 is World Birth Defects Day! We’re joining @MarchofDimes, @Nacersano, @CDC_NCBDD, and other organi...
02/18/2021

Save the Date: March 3 is World Birth Defects Day! We’re joining @MarchofDimes, @Nacersano, @CDC_NCBDD, and other organizations at 11 am ET for a bilingual discussion about global efforts to prevent birth defects. Join us - use #WorldBDday to participate. #ManyBirthDefects1Voice

Save the Date: March 3 is World Birth Defects Day! We’re joining @MarchofDimes, @Nacersano, @CDC_NCBDD, and other organizations at 11 am ET for a bilingual discussion about global efforts to prevent birth defects. Join us - use #WorldBDday to participate. #ManyBirthDefects1Voice

Check out the new MotherToBaby podcast.
02/18/2021
The MotherToBaby Podcast: COVID-19 Vaccine in Pregnancy & Breastfeeding

Check out the new MotherToBaby podcast.

The COVID-19 vaccine is being rolled out and pregnant and breastfeeding people understandably have questions about getting it. Two teratogen information specialists (experts in exposures in pregnancy and breastfeeding) join host Chris Stallman, CGC to address questions the MotherToBaby service is ge...

Food borne illnesses are especially dangerous during pregnancy as they increase the risk of complications.
02/12/2021

Food borne illnesses are especially dangerous during pregnancy as they increase the risk of complications.

FOOD OUTBREAK: 7 people hospitalized in a Listeria outbreak linked to Hispanic-style fresh and soft cheeses like queso fresco. A specific type or brand of cheese has not been identified.
If you are pregnant, aged 65 or older, or have a weakened immune system, do not eat any Hispanic-style fresh and soft cheeses until we learn more.
https://go.usa.gov/xsraW

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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?