Sylvia von Mackensen

Priv.-Doz. Dr. Sylvia von Mackensen is a Research Fellow at the Department of Medical Psychology within the Faculty of Medicine at the University Medical Center Hamburg-Eppendorf (UKE). Her primary affiliation is with the Center for Psychosocial Medicine. Her research focuses on patient-reported outcomes in haematology, particularly in individuals with inherited bleeding disorders like haemophilia. Key areas include health-related quality of life, caregiver burden, and the impact of treatments like gene therapy and prophylaxis on patient well-being. She has contributed to international studies analyzing pandemic effects on patients and caregivers, sports' role in managing haemophilia, and cross-cultural adaptations of outcome measurement tools.

Education and qualifications include a doctoral degree (Dr. rer. biol. hum.) and Privatdozent status, indicating her academic teaching and research credentials. Her work spans interdisciplinary collaboration with institutions globally, including studies on emicizumab, concizumab, and octocog alfa therapies. She has authored over 80 peer-reviewed publications since 1999, emphasizing translational research between clinical practice and patient-centered outcomes.

Her research also addresses socioeconomic impacts of bleeding disorders, telemedicine applications for pediatric care, and spousal/partner quality of life in haemophilia. She has led validation efforts for questionnaires like the HEP-Test-Q and Haem-A-QoL, advancing standardized tools for assessing physical and psychological health in chronic disease populations.

Notable collaborations include projects with the European Haemophilia Consortium, industry-sponsored clinical trials (e.g., BAY 81-8973), and cross-cultural studies in Iran, Côte d'Ivoire, and Germany. She actively investigates emerging therapies' real-world efficacy and their psychosocial implications, contributing to both academic and applied healthcare advancements.