Perinatal transmission of Lyme disease was the focus of a June 2022 scientific think-tank at the Banbury Centre at Cold Spring Harbor Laboratory which was funded by the Cohen Foundation.  Meeting organizers included  Dr. Monica Embers, Dr. Charlotte Mao and Dr. Liz Darling and Sue Faber of LymeHope.  

On March 4, 2023, Sue Faber (President and Co-Founder of LymeHope) presented a talk titled:  Perinatal Transmission of Lyme disease: A Path Forward, for the LivLyme Foundation Summit.  A downloadable resource with an introductory letter, as well as comprehensive document laying out all the evidence, citations and more, to accompany this presentation can be found here:

We have recently updated our website to provide more information on Lyme disease and Pregnancy which can be found in our 'what is Lyme' section.  The LymeLight Foundation has produced several videos interviewing families impacted by congenital Lyme disease.  Hearing the stories of those directly impacted is powerful and important.

A new study titled:  Lyme borreliosis in pregnancy and associations with parent and offspring health outcomes:  An international cross-sectional survey has been published in Frontiers in Medicine, and is open access to all.  Link to the full paper here

Research Team: The primary investigator leading this research is Dr. Elizabeth Darling from McMaster Midwifery Research Centre, McMaster University, along with her team Dr. Katherine Leavey, Dr. Elizabeth Cates, Rachel MacKenzie and Olivia Marquez.  Other collaborators include Dr. Charlotte Mao, Dr. Melanie Wills, Dr. Isabelle Boucoiran, Dr. Vett Lloyd, Dr. Abeer Omar and Sue Faber.  This research was funded by the DH Falle Family Foundation.

Research Objectives: The objective of the survey was to investigate the health outcomes of people with Lyme disease in pregnancy and their offspring, and to compare these to people without Lyme disease and pregnancy. 
 
Study Population: Researchers analyzed data from a seven-section survey which was administered in both English and French and available for international participation between September 2020 to November 2021.  Participants were eligible to complete the survey if they were at least 18 years old and had been pregnant at least once (regardless of the outcome of the pregnancy).  Participants could have been diagnosed with acute or chronic/late stage Lyme disease, suspected they may have had or have Lyme disease, or never been diagnosed with or suspected Lyme disease.  

Conclusion: 'Overall, this pioneering survey represents significant progress toward understanding the effects of LD on pregnancy and child health. A large prospective study of pregnant people with LD, combining consistent diagnostic testing, exhaustive assessment of fetal/newborn samples, and long-term offspring follow-up, is warranted.'

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State-of-the art science is required to investigate the research gaps and complexities of maternal-fetal transmission of Lyme and will require a collaborative, disciplinary, multi-stakeholder ‘relay-team’ approach, which values an integrative model of bringing together patients with lived experience, front-line clinicians, clinical researchers, Government officials and scientists to collectively identify, propose and carry out further investigation.

Lyme Disease & Pregnancy: State of the Science & Opportunities for Research - April 29, 2021
Agenda:
 Start – 10:00
Lyme Disease and Pregnancy:  Why Research is Urgently Needed.
Isabel Rose, Chair, Mothers Against Lyme and Board Member, Project Lyme
 
10:15-33:00
Epidemiology and Pathobiology of Lyme Disease: Implications for Research. 
Holly Ahern MS, MT(ASCP): Associate Professor of Microbiology, SUNY Adirondack.
 
34:30- 1:04
Maternal-Fetal Transmission of Lyme Disease: Research Gaps and Opportuities. 
Sue Faber, RN, BScN:  Co-Founder and President, LymeHope.
 
1:05:15-1:11
NIH Research Opportunities for Maternal and Pediatric Infectious Diseases.
Nahida Chaktoura, MD, Maternal and Pediatric Infectious Diseases Program Officer, National Institute of Child Health and Human Development (NICHD).
 
1:11:40-1:20
Advancing Research for Tickborne Diseases: Guidance and Resources for Investigators.
Maliha Ilias, PhD, Lyme Disease Program Officer, National Institute of Allergy and Infectious Disease (NIAID).
 
1:21-end – Q&A