June 21, 2022
It’s no secret that not all bleeding disorders are created equally. A huge amount of time, research effort, and funding have improved our understanding of the impact of hemophilia on those living with it. Over time this has resulted in the development of effective treatments. By contrast, a brief glance at the number of publications on Glanzmann’s Thrombasthenia (GT) shows that this “one in a million” disorder has received very little investment. The result is that treatment options are limited.
Glanzmann’s 360 is a natural history study conducted by Haemnet, with support from Hemab Therapeutics, that has received NHS ethical approval in the UK. We hope it will improve our understanding of the impact GT has on people and families.
This mixed-methods study involves a survey and detailed interview program designed to capture the experiences of as many people within the Glanzmann’s community as possible – no mean feat for a condition as rare as GT. The data we gather will be used to create publications and other educational materials. We hope it will also help inform the development of future clinical studies for new treatments of GT.
The first stage of Glanzmann’s 360 gives those within the GT community the opportunity to complete a 10-minute survey that asks some questions about how their bleeding disorder affects daily life. You can take part in the survey here: https://haemnet.typeform.com/to/WStqe1Wb
Those based in the UK can also opt to take part in more in-depth interviews. Interview participants will be reimbursed for their time. As the study progresses, Haemnet hopes to expand this part of the study to people with GT living in other countries.
If you have any questions about the study, you can reach out to Dr. Kate Khair, Haemnet’s Director of Research, via email – firstname.lastname@example.org
Haemnet is a specialist research and communications consultancy working in the bleeding disorder community. We work with patient experts and organizations, healthcare professionals, and industry partners to produce educational content and conduct in-depth qualitative research into the lived experience of people affected by bleeding disorders. In the past two years, we’ve conducted similar mixed-methods research studies on women with bleeding disorders (the Cinderella study) and men with hemophilia interested in gene therapy (the Exigency study).
Hemab is a biotech company developing next-generation therapeutics for serious, underserved bleeding and thrombosis disorders. Based in Denmark and the US, Hemab aims to progress its pipeline of monoclonal and bispecific antibody-based therapeutics with the vision of transforming the treatment paradigm for blood disease patients—from orphan disorders to broad indications with high unmet need. Learn more at hemab.com