Introducing the Myeloma Canada Patient Database
On Thursday, September 1st, 2016 the Myeloma Canada Research Network (MCRN) launched the first-ever Canadian Multiple Myeloma National Database. The database is unique in that it was created in collaboration with Canadians living with multiple myeloma and insights from over 20 frontlines myeloma researchers and clinicians across Canada.
Why a database?
The MCRN Canadian Multiple Myeloma Database will help inform current Canadian benchmarks for successes in treatment therapies using real world Canadian evidence
-Dr. Chris Venner, Chair, MCRN Canadian Multiple Myeloma Database
This is a milestone moment in the support of people living with one of the most aggressive forms of cancer. A growing cancer that tends to impact a 60+ audience; each day in Canada, 7 people learn they have multiple myeloma. It’s estimated 2,700 Canadians are living with multiple myeloma – over half of these Canadians will die this year.
Our guests today:
- Dr. Donna Reece, Director of Program for Multiple Myeloma and Related Diseases at Princess Margaret Cancer Centre, Toronto. Dr. Reece is currently the chair of the Multiple Myeloma Clinical Trials Group of the National Cancer Institute of Canada
- Aldo Del Col, Co-founder of Myeloma Canada in 2005. Diagnosed with multiple Myeloma in 2002 at a younger age of 48, Mr. Del Col has been focused on establishing the organization as the voice of Canadian Myeloma Community. More recently, he co-founded the Myeloma Canada Research Network (MCRN) to accelerate the advancement of Canadian Myeloma research. firstname.lastname@example.org
- Norma Lindner, Chair Halton -Peel Myeloma Support Group. Norma was diagnosed in 2012. She was seeing her doctor for anemia, and shares her story how it was discovered she had multiple myeloma.
The Goal of the Myeloma Canada Research Network Database:
- Evaluate the outcomes of Multiple Myeloma patients in Canada
- Identify the strengths and challenges in management of Canadian Multiple Myeloma patients
- Understand the different regional needs to provide adequate care
- Understand the outcomes of the novel therapeutics strategies
- Support the development of centres of excellence for Multiple Myeloma Research
Major points of Conservation:
- Blood tests: antibody levels, serum protein electrophoresis (SPEP), protein levels
- No apparent etiology for myeloma
- How the Myeloma Canada database will help physicians and patients with multiple myeloma
- Making research treatments available in more remote areas, providing guidelines
- Educating front line physicians to test for myeloma in a more efficient, expeditious way
- Made in Canada treatments
- Derailing the potential development of myeloma
- Symptoms Bone damage, vertebral compression fracture (VCF), back pain, cold sores, anemia, osteopenia, bone lesions, bone marrow biopsy
- stem cell transplant
- The role of Myeloma Canada, research
- Advocacy for treatment funding, Provincial health plans & private drug plans, funding new drugs
- Living longer with Myeloma
- Canada’s research on multiple myeloma
- Managing yourself in the medical system, knowing how to be your own advocate
- Exercise and myeloma, physical activity and lifestyle, the new normal….not living life fully consumed by the myeloma, living life to the fullest!
- The mental and spiritual of exercise, pride, accomplishment
- Speaking to your physician about exercise and physical activity
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Shira Litwack, Medical fitness professional |Cancer Exercise Specialist|Personal & Corporate Health Coach | Fitness For Disease Recovery| Industry Expert Cancer Exercise| Health and Fitness Professionals’ Educator
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