Patient First Research. Patient First Engagement. Patient First Values and Preferences. Patient Questions. Making an Informed Choice.
Important Update re: Canadian Lyme Research
As you know, the federal government announced $4 million of funding for Lyme disease. The funding process has started, and patients are starting to receive invitations to participate in various ways.
Patient participation is typically a requirement for funding.
There are two different Canadian Lyme research networks:
1. The Canadian Lyme Disease Research Network (LRN), and
2. the Canadian Lyme Consortium (CLC).
The Canadian Lyme Consortium has prepared a letter for the Lyme disease community to introduce themselves and articulate their vision for Lyme research and patient role which you can download below.
Canadian Lyme Consortium Letter of Introduction March 2018
Canadian Lyme Consortium Announcement Feb 2018
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:
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:
Special thanks to Rossana Magnotta and the G. Magnotta Foundation as well as CanLyme for their dedication and support in establishing the G. Magnotta Lyme Disease Research Lab at the University of Guelph.
Thanks To CanLyme for providing funding to Mt Allison Lyme Research Network.
Patient Research Questions
Here are some questions patients could ask to evaluate any invitation to participate in research projects, whether through the Canadian Lyme Disease Research Network (LRN) (co-lead by Dr. Tara Moriarty (PhD) and Dr. Keiran Moore (MD)), the Canadian Lyme Consortium (CLC) (co-led by Dr. Vett Lloyd (PhD) and Dr. Melanie Wills (PhD) or otherwise:
Why LymeHope has chosen to support the CLC
Simply put – we believe that the CLC is committed to meaningful patient engagement (as opposed to ‘tokenism’). We believe that the CLC research will:
The CLC is still in early stages, working on a website and details about how and when you can sign up when the registry is ready - we will send out that information as soon as it is available.
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.
Our intention is not to discourage anyone from participating in either or both networks; this is a personal decision.
Transplacental transmission resulting in congenital infection of Borrelia Burgdorferi (Lyme) has been documented and accepted over the last 33 years (1985 to 2018) by multiple International physicians, researchers, scientists and other experts. The World Health Organization has now added Congenital Lyme Borreliosis to the ICD-11 codes.