Myeloma is a cancer that occurs when myeloma cells multiply in bone marrow, interfering with the production of healthy red and white blood cells, and platelets. According to the Myeloma Canada Patient Handbook, there are approximately 8,000 Canadians with myeloma and 2,900 new cases diagnosed each year. Myeloma is a relatively unknown cancer, and research plays an important role in developing new drugs and treatments to improve the quality and length of life for myeloma patients.
About the project
The Myeloma Priority Setting Partnership (PSP) is led by Dr Anthony Reiman and governed by a Steering Group that has equal representation from people living with myeloma, caregivers, and healthcare providers. Together, this group is working to identify and prioritize questions about myeloma that can be answered through research—and, importantly, reflect the needs of people with myeloma and those who care for them.
Step 1: Identify Research Questions
Following the James Lind Alliance (JLA) method, the Myeloma PSP team developed a survey that asked people to share the questions that they most wanted to see answered through research. The survey was available online and in print between October 2019 and January 2020, and widely distributed to myeloma patients, caregivers, and healthcare professionals. The team received more than 500 responses identifying more than 3,000 possible research questions.
Step 2: Prioritize Research Questions
After the first survey, questions will be checked to see if they’ve been answered by previous research, and similar questions will be consolidated into a long list of 60-70 indicative questions. Questions that haven’t been answered by prior research will be added to a second survey, so that people can select the questions that matter most to them.
Step 3: Select the Top 10 Myeloma Research Questions
A short list of 20-30 questions identified in the second survey will reviewed by the Myeloma PSP Steering Group who will select a final list of 10 priorities, which will be available to researchers and research funders. The process is overseen by the James Lind Alliance (JLA), a UK-based, non-profit organization.
- Setting the next stage for cancer research in Canada – Horizon Research Services, June 1, 2020
- Myeloma Priority Setting Partnership launches first survey – October 29, 2019
Dr Anthony Reiman
Medical Oncologist, Saint John Regional Hospital
Canadian Cancer Society Research Chair, University of New Brunswick
Assistant Dean – Research, Dalhousie Medicine New Brunswick
Professor, Department of Medicine, Dalhousie University
Myeloma PSP Coordinator
MSSU Clinical Research Assistant
About Myeloma Canada
Myeloma Canada is a non-profit, charitable organization created by, and for, Canadians impacted by multiple myeloma, a relatively unknown cancer of the plasma cells. Exclusively devoted to the Canadian myeloma community, Myeloma Canada has been making myeloma matter since 2005. As a patient-driven, patient-focused grassroots organization, Myeloma Canada drives collaborative efforts to unify the voice of the community to effectively shape the Canadian treatment landscape.