Patient First Research. Patient First Engagement. Patient First Values and Preferences. Patient Questions. Making an Informed Choice.

3/11/2018

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

clc_moving_foward_final_march_2018.pdf
File Size:	85 kb
File Type:	pdf

Download File

Canadian Lyme Consortium Announcement Feb 2018

clc_announcement.docx
File Size:	15 kb
File Type:	docx

Download File

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.
https://www.mta.ca/Community/News/2017/May/Mount_Allison_establishes_Lyme_Research_Network/
Global News Clip here:
https://globalnews.ca/news/3429932/mount-allison-university-researchers-establish-lyme-research-network/

Dr Melanie Wills, member of the Canadian Lyme Consortium leads the G. Magnotta Lyme Disease Research Lab
https://news.uoguelph.ca/2017/06/lyme-disease-grant/
CTV news clip regarding Dr Wills and Lyme Research here:
https://www.ctvnews.ca/video?clipId=1173246&playlistId=1.3515213&binId=1.811527&playlistPageNum=1&binPageNum=1&hootPostID=399603049e572265f8265407b6128e5

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:

Who will I be supporting / working with: Who are all the participants in the network?
Memberships: Do any of the members of the network belong to AMMI (Association of Medical Microbiologist and Infectious Disease Canada) or IDSA (Infectious Disease Society of America)? Do any of the members of the network work for Canadian or U.S. public health / CDC? This is important to ask because membership in (or a job with) an organization that has a “position” on Lyme disease may make it difficult for members to disagree or take an opposing position.
Conflicts of Interest: Have (or will) all the network participants been required to disclose all potential conflicts of interest such as test kit patents, vaccine patents, financial support from Pharmaceutical companies, insurance companies etc.
Research Priorities: What are the specific areas of research that will be explored? If related to testing, will any other tests other than the current 2-tier test protocol be explored? If related to treatment, will treatments beyond the standard 2-4 weeks be explored?
Project Design & Approval: How will research projects be approved and by whom? If patients are being invited into this process, will patients get a vote?
Peer Review: Will results of the research projects be subject to publication? Will patients be included in a pre-publication peer review process?
Confidentiality: Will the results of any findings from my participation be released to me? Will they be treated confidentially by the research team and in publication? Will my participation be disclosed to anyone without my consent?
Exclusivity: If I participate with this network, will it mean I cannot also support or get involved with other research networks or research priorities?
Donation of Personal Samples (i.e. saliva, blood, tissues): If being asked for a personal sample for a biobank, you should understand exactly what the samples will be used for (the specific research topic, whether it will be saved or destroyed, all other possible uses for the sample, a list of the steps that will be taken to protect your medical information, whether or not you have the ability to withdraw your sample (and/or to ask for it to be destroyed) from a project at any point along the way, exactly who will have access to it and for what purpose, will I be informed if any health data is extracted from my samples, such as identification of bacterial/viral infections, etc.). This is perhaps the most important subject – no one wants to find out they donated a sample thinking it will be used to evaluate different treatments to later find out your sample was used for a different purpose, for example, future vaccine development. Ask - will I have the specific right to know the exact research topic and design before I commit to allow my personal sample to be used?
Prior Research & Stance on Lyme disease: Can you point me to some previous Lyme-related research published by members of the research network (this can help you understand where their prior focus on Lyme disease has been).
Full deletion of my Records: If at any time I choose to withdraw my participation from a network, will I have the option to have the network permanently delete all my personal information including my name, email, medical data and any account that has been created

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:

Be ethical, transparent and unbiased,
Be focused specifically on projects that will help patients and will be guided by patient feedback about top priorities, and
Provide an opportunity for true partnership and participation by patients

Our motivation is to empower patients to understand the implications and give informed consent.

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.

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