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.
Invited experts included clinicians, researchers, experts in government, patient advocates and representation from funding agencies. An agenda of this meeting has been posted by the Banbury Centre.
As a result of this meeting we have identified clear action items and are in the process of writing a report which will be published. More about the Banbury meeting can be found by watching the panel presentation for the Cohen Foundation 2022 panel The Value of Partnerships: A Multi-disciplinary Approach to Addressing Perinatal Transmission of Lyme disease.
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.'
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
Start – 10:00
Lyme Disease and Pregnancy: Why Research is Urgently Needed.
Isabel Rose, Chair, Mothers Against Lyme and Board Member, Project Lyme
Epidemiology and Pathobiology of Lyme Disease: Implications for Research.
Holly Ahern MS, MT(ASCP): Associate Professor of Microbiology, SUNY Adirondack.
Maternal-Fetal Transmission of Lyme Disease: Research Gaps and Opportuities.
Sue Faber, RN, BScN: Co-Founder and President, LymeHope.
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).
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
A ground-breaking research study on Lyme and Pregnancy has launched, led by Canadian Principal Investigator Dr. Elizabeth Darling and team from the McMaster University Midwifery Research Centre.
LymeHope is honoured to partner and collaborate in this important endeavour, facilitating the 'birth' of a new era of research focused on assessing perinatal (mother-to-baby) transmission of Lyme disease - the first North American research into this alternate mode of transmission in 25 years!
Research is open to US, Canada and Globally.
Detailed information and how to participate here: https://www.lymehope.ca/news-and-updates/ground-breaking-lyme-and-pregnancy-research-launches
"We are taking a stand against an escalating threat [of Lyme disease in Canada], and we are doing so by taking a very powerful weapon to that table.. and that weapon is science."
"one of the unique things we offer in this lab is a clinical academic pipeline and that's what really sets us apart. What we are trying to develop here is this idea that we are going to be working with patients as stakeholders and collaborators in research and that we're studying the conditions that they find relevant..."
"We don't want to do research that doesn't have clinical significance, we want to bring something to the clinic that will impact the health of Canadians."
– Dr. Melanie Wills, PhD, Director, the G. Magnotta Lyme Disease Research Lab, University of Guelph
Attached is a fantastic (3 minute) video featuring Dr. Melanie Wills, an incredibly brilliant and dedicated scientist and Director of the G. Magnotta Lyme Disease Research Lab at the University of Guelph. Dr. Wills has a PhD in molecular and cellular biology with post-doctoral studies in Lyme Borreliosis.
Rossana Magnotta, CEO and co-founder of Magnotta Wines, tragically lost her husband Gabe, to Lyme disease. Rossana has already made a huge contribution to Canadian health by supporting and bringing the G. Magnotta Lab to life, and continuing to speak out and advocate for scientific research on the subject of Lyme disease that will be patient-centred. This means not just studying ticks, but also the humans who are suffering, with a goal of improving the lives of those with these under-diagnosed, under-recognized and debilitating diseases.
The G. Magnotta lab is also a member of a new, national research network called the Canadian Lyme Consortium (CLC) which is a volunteer team of Canadian scientists and stakeholders coast to coast dedicated to ethical, transparent and patient-centred research on Lyme disease in Canada.
We truly believe that Canada can and will be a global leader in the recognition and transformation of the diagnosis, testing, treatment and management of Lyme & related diseases.
When you pick up your favourite wines this summer, consider trying some of the wonderful wines from Magnotta Winery. It’s a great way to support a Canadian business hiring Canadian workers, AND say thank you to the Magnotta family for their efforts to protect and heal Canadians from the rising threat of Lyme & related diseases in Canada.
More about the G. Magnotta Foundation and the research lab here: https://www.gmagnottafoundation.com/our-lab/
Initial CLC Website here & sign up to receive updates:
The Canadian Lyme Consortium - CLC
The Canadian Lyme Consortium is a research network that will serve as a platform for:
CLC website: http://www.clymec.ca
LymeHope is fully aligned with the Canadian Lyme Consortium as it is committed to meaningful patient engagement. We believe that the CLC research will:
Our motivation is to empower patients to understand the implications and give informed consent.
Full disclosure: LymeHope has been invited to participate in the CLC as a patient representative. LymeHope has made the decision to support the CLC. Our goal here is to provide information, to be transparent about LymeHope’s decision and reasons, as well as provide guidance to patients as to how to evaluate and make their decision whether and how to get involved. Aside from participating in and supporting the CLC, we have no financial ties or conflicts of interest to disclose.
CLC Partners Include:
The Mount Allison Lyme Research Network
Dr. Vett Lloyd, member of the Canadian Lyme Consortium leads the The Mount Allison Lyme Research Network which is an interdisciplinary group of researchers in the sciences, social sciences and humanities, jointly supported by Mount Allison University and the Canadian Lyme Disease Foundation.
Global News Clip here:
G. Magnotta Lyme Disease Research Lab
Dr Melanie Wills, member of the Canadian Lyme Consortium leads the G. Magnotta Lyme Disease Research Lab
CTV news clip regarding Dr Wills and Lyme Research here: