Seeking patient partners with ANCA vasculitis
(granulomatosis with polyangiitis or microscopic polyangiitis) as co-authors for a guideline panel
February 2020-April 2020, approx 10-15 hours total
Why We Are Doing This
There are benefits and drawbacks of different treatments for vasculitis, and patients and their healthcare providers may not always have enough information to make the best choice for each individual. When deciding upon a treatment path and to ensure high-quality, evidence-based care when information is scarce, healthcare providers look to treatment guidelines.
Treatment guidelines are created when new research evidence may change clinical care and improve patients lives. This guideline is motivated by the recent publication of the “PEXIVAS” trial in the New England Journal of Medicine. The trial found that plasma exchange (also called plasmapheresis or apheresis, a way of removing antibodies from the blood) may reduce the risk of needing long-term dialysis and that a faster rate of reducing the dose of prednisone reduces the risk of serious infections.
To accelerate the PEXIVAS evidence into practice by developing a new treatment guideline, we first need to carefully consider all the evidence, compare it to other treatments available for vasculitis, and make sure we are answering the right questions and making recommendations that matter to patients.
Who We Are
A team of health care providers, patients, and researchers develops our guidelines. We aim to translate potentially practice-changing evidence into trustworthy, international guidelines and decision aids in a short time frame. Alfred Mahr, MD, MPH, PhD (Kantonsspital St. Gallen, Switzerland) and Reed Siemieniuk, MD, PhD(c), FRCPC, ABIM (McMaster University, Canada) lead the group.
Who We Are Looking For
The time commitment would be approximately 10-15+ hours (depending how involved you would like to be) spread out over approximately four months.
- Introduction call about the guideline involvement process and the commitments from the panel members (30-45 minutes)
- Review and provide feedback on the systematic review protocol, to identify and prioritize patient-important outcomes (30-45 minutes)
- Participate in an introductory session to explain the evidence from the systematic review (generated by separate team), and answer any questions you may have (60-90 minutes)
- Participate in a teleconference with the guideline panel (clinicians, methodologists, patients) and help draft recommendations (90 minutes), and review and provide feedback for the guideline manuscript and decision aids (60+ minutes)
All communication is online. This guideline group is international. No specific skills are required.
We provide training and are happy to answer any questions you may have, so that you feel confident contributing to the discussion
What You Get for Participating
All patient partners will be full panel members, and co-authors on the guideline (published in The BMJ). Patient partners also receive an honorarium for their collaboration.
MAGIC and The BMJ have a strict policy regarding financial and professional/ intellectual conflicts of interests. All guideline panel members must be approved by the MAGIC executive and The BMJ before participating in the project. Our goal is to have a panel that is able to objectively review the evidence and draft recommendations without bias.
How to Participate
To participate, we ask that you complete a short questionnaire about yourself and your disease experience. Click the button below and complete the questionnaire today!