UWaterloo expert helps develop database repository to manage treatment for hemophilia patients

Today is World Hemophilia Day under the theme ‘Access for all: prevention of bleeds as the global standard of care’. Dr. Andrea Edginton, Hallman Director at the University of Waterloo School of Pharmacy, uses her research to help pharmacists, doctors and nurses manage treatment for hemophilia patients that has, in turn, helped these patients lead a better quality of life.

What is hemophilia?

Hemophilia is a rare genetic disorder, primarily affecting men, where a person’s blood does not clot correctly because they do not produce a specific clotting factor. This can lead to life-threatening internal bleeds and painful joint bleeds and, over time, significantly reduces mobility.  

How prevalent is hemophilia, and how is it treated?

Worldwide, just over 1.1M people are estimated to be affected by hemophilia, with 418,000 having severe hemophilia. Preventive treatment includes the replacement of missing clotting factors through frequent injections to avert bleeds. However, only 25 per cent of hemophilia patients receive adequate treatment due to high medication costs over a person’s lifetime and lack of access, particularly in lower-income countries. 

How has your research helped those with hemophilia?

Using advanced pharmacokinetic - how the body interacts with medication - modelling techniques, my research helps hemophilia treaters, and their patients, make optimal decisions about prophylactic clotting factor injections. With a team at McMaster University, we built and maintain the Web-Accessible Population Pharmacokinetic Service – Hemophilia (WAPPS-Hemo). This free web-based platform allows treaters to input patient information and clotting factor levels in their blood following an injection. The clotting factor levels are calculated over time to pinpoint when patients need another injection to reduce dose and injection amounts.

WAPPS-Hemo is the largest database repository in the world and is used in over 700 hemophilia treatment centers in over 50 countries. In addition, a patient-level app allows patients to self-manage their condition.