Oct 29/23
🍁 Your Data VHL Canada
You might participate in research with hospitals or other researchers*. Some considerations (what are others?):
- Consent Process
- Each province maintains their own privacy laws
- PHIPA (Personal Health Information Protection Act) in Ontario
- Federal, e.g. Genetic Non-Discrimination Act
- Generally, just sharing your data is different than being in a clinical trial. **
- Honorarium, etc. ***
Canada also has Canada’s Rare Disease Strategy, developed with experts from every sector. The Strategy details the extraordinary burden faced by Canadian families with rare illnesses. Participation and informational opportunities available. *
CORD (Canadian Organization for Rare Diseases): Nationally, represents all rare disease patient organizations, work with government and research levels, links, information, surveys/research, conferences, Canada’s Rare Disease Strategy, etc.
VHL Canada, vhlcan.ca – we have a permanent peer support volunteer who is a highly trained and registered professional in social work and counselling. Experienced in mental health clinics and school boards (all places regulated by Province of Ontario)
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* For example: MyVHL, VHL Alliance (VHLA), a VHL-specific patient registry that produces natural history research which ‘affects all stages of drug development, from the ability to write research grants to supporting regulatory approval…'
VHLA and US laws protect your data:
- HIPAA (Health Insurance Portability and Accountability Act)
- FISMA (Federal Information Security Management Act)
- GINA (The Genetic Information Nondiscrimination Act) 2008
- FDA (US Food and Drug Agency)
Also, Europe and other countries may have official policies, laws and endorsements
**“A clinical trial is the study of new ways to prevent, detect or treat diseases or conditions… MyVHL collects information voluntarily from people with VHL…” [and other diseases BHD, SDH and HLRCC]
*** VHLA for MyVHL will provide a $50 Amazon.com gift card to all US-based participants… note: in Canada, amazon.ca card only
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