HEMA-TIMES: Paroxysmal Nocturnal Hemoglobinuria Needs Assessment Results

Research led by Dr. Christopher Patriquin and Dr. Loree Larratt

Paroxysmal nocturnal hemoglobinuria (PNH) is an ultra-rare, and under-recognized complement-mediated disease. Because of its rarity, it is not well understood. In order to understand both current perception and knowledge of PNH with hematologists, a needs assessment was conducted. The research is being led by Dr. Christopher Patriquin (McMaster University, The Canadian PNH Network) and Dr. Loree Larratt (University of Alberta, The Canadian PNH Network). 

This needs assessment was distributed by mail and electronically to upwards of 400 Canadian hematologists working in academic teaching centres and/or community practices. The response rate to this needs assessment is 19% (n=77). What follows is an overview of the key takeaways from the needs assessment, along with the response data.