Director’s Corner
by Stacy E. Croteau, MD, MMS
We are all looking forward to spring; more daylight, warmer days, and (hopefully) a continued decline in COVID-19. Although plans and activities are not returning to “normal” yet, we are hopeful that access to and use of the COVID-19 vaccines will spread and increase our ability to safely return to many of our favorite pastimes. Please get your COVID-19 vaccine as soon as you are eligible. Presently vaccines are only approved for individuals as young as 16 years old, but the next wave of clinical trials looking at the safety and effectiveness for children as young as 12 years old are underway. Physical separation from others, interference with access to health care and other supports, and job and income insecurities have led to concerning trends in physical health and mental health. The Boston Hemophilia Center team remains committed to helping patients and families with these challenges. Nurse, Maura Padula, highlights important considerations for health care maintenance and access in this issue. We are also excited to start a Community Corner section to help promote resources and businesses within our bleeding disorder community.
While our primary focus over the past year has focused on COVID-19 and patient care, we have continued to make progress in improving the care for individuals with bleeding disorders through clinical studies. In this issue, you can read more about our ongoing CDC Community Counts project, written by our fantastic team of HTC Data Managers.
Results from a few of our projects that took place just prior to the onset of the COVID-19 pandemic have been recently published in academic literature. Low von Willebrand factor in pediatric patients: Retrospective analysis of 293 cases informs diagnostic and therapeutic decision making was an important study to help learn more about those with low von Willebrand Factor levels and was lead by our bright and enthusiastic undergraduate student, Michele Shui.
In collaboration with our platelet biology basic scientists, we published findings from our study to learn more about how platelet features may contribute to bleeding symptoms in patients with severe hemophilia: Decreased Platelet Surface Phosphatidylserine Predicts Increased Bleeding in Patients with Severe Factor VIII Deficiency. Thank you to all those who chose to participate in these important projects.
We have also had recent publications to help increase awareness and information about new and investigational therapies: Discussing investigational AAV gene therapy with hemophilia patients: A guide and 2021 clinical trials update: Innovations in hemophilia therapy.
We continue to update our website with new research publication information, communications, and educational content. Please be sure to bookmark our website for easy access to these materials. Also like us on Facebook (BostonHemophilia), as we post and link new content there as well.
Stay strong. Stay safe.
