Patients - By participating in our study, patients can keep better track of their own health and the key outcomes of their treatment. Having a regular record of the outcomes measured by PROBE is effective in understanding current treatments and how they are affecting their daily life. This can help them to better advocate with their health care providers.
National Member Organizations (NMOs) - PROBE provides evidence about patients’ lived experience and the treatment of hemophilia in their country and their region. These data can be used to advocate regarding key issues to government or service funding bodies in a credible way.
Bleeding Disorder Registries - PROBE collaborates with a number of bleeding registries around the world that collect standardized data on people with hemophilia. PROBE provides technical support to deliver the best data for patients.
Drug Manufacturers - PROBE can be included in clinical trials as a patient-reported measure of health-related quality of life and can assessed over the study period. PROBE is highly recommended to serve as a benchmark for comparative effectiveness to other outcomes that are collected.
Researchers/Academic Studies- Academic and independent investigators can use PROBE as a convenient way to assess participants’ outcomes, burdens and experiences living with hemophilia. PROBE data from an independent study will be included in the larger PROBE database to allow for comparisons to similar patients or to healthy controls.
Advocates - Data from PROBE provides necessary evidence to promote access to appropriate therapies. The structured data collection platform covers a wide spectrum of health economic environments for evidence-based decision-making and advocacy.
