What is the PHA Canada Research Capacity Building Project?
In 2022, PHA Canada launched a new multiyear initiative that aims to enhance Canada’s PH research environment and build capacity for patient-oriented research.
The Project will focus on three main priorities:
Establishment of a Canadian PH Clinical Trials Network
Expansion of the Canadian PH Registry to include a biobank
Development of patient education and training initiatives
Canadian PH Clinical Trials Network
A clinical trial is a research study that evaluates the safety and effects of one or more treatments on actual patients. Unlike clinical trials for more common diseases such as cancer or arthritis, there are unique challenges associated with rare disease clinical trials, partly because patients are fewer and scattered around the globe. As a result, studies for rare disease research must find ways to adapt their designs without compromising the quality of the research.
Patient Registries and Biobanks
A disease registry is a unique database that contains information about people diagnosed with a specific type of disease. Human biobanks collect and supply human tissue, blood specimens, and associated data for research. These approaches have the potential to increase scientific efficiency by maximizing the use of valuable and rare data and samples.
Patient Education and Training
The third pillar of the Research Capacity Building Project includes a broad range of learning opportunities for patients and caregivers, based on a train-the-trainer model. This includes:
increasing regular communication channels.
offering research-related workshops via webinars.
advocacy on behalf of the PH community.
increasing the PH community’s knowledge and understanding of the value of real-world evidence (data generated in settings outside clinical trials);
the role of patient-reported outcomes (an outcome reported directly by patient who experienced it).
This initiative will create a foundation of patient leadership, collaboration and cooperation that ushers in a new era in patient-oriented PH research in Canada. Because the only way to achieve better outcomes for patients, is to include patients every step of the way.