Health care and research in the field of benign hematology is performed at the departments of pediatric hematology (WKZ) and the Van Creveldkliniek (UMC Utrecht). Operating as one functional team, together we perform fundamental, laboratory research, as well as a large variety of sponsor-driven (pharmaceutical companies) and investigator-initiated trials in the field of hemostasis, erythropoiesis and hereditary anemias and coagulation defects. Our PI’s coordinate their longstanding research lines in which they closely collaborate with scientists from our research lab.

Lifecycle uitklapper, klik om te openen

Our research in the field of benign hematology is structured in three main research lines:

  • Coagulation disorders (such as hemophilia, Von Willebrand disease and allied disorders)
  • Rare hereditary anemias (such as sickle cell disease, red cell enzyme or membrane disorders, and Diamond-Blackfan Anemia)
  • Congenital and acquired platelet disorders (such as immune thrombocytopenia, Bernard Soulier syndrome and Glanzmann’s disease)

The departments of pediatric hematology and the Van Creveldkliniek operate as one functional team. Around the age of 18 years, patients transit from the pediatric to the adult health care professionals within the same team. This allows us to generate databases of medical data that are lifecycle databases by nature. For example, from young age onwards, we screen our patients for well-known complications of their hematological condition such as organ damage, iron overload or arthropathy (joint damage). Also quality of life and social participation are fields of interest that are being followed throughout a patient’s lifecycle.

Interdisciplinary uitklapper, klik om te openen

We have extrapolated our comprehensive health care approach to our research lines. We have (longstanding) collaborations with the department of Gastroenterology and Hepatology (HIV and hepatitis C infections in hemophilia patients), Cardiology: cardiovascular disease and coagulation, inherited bone marrow failure syndromes,  Imaging (radiology): of arthropathy in hemophilia, Physical Therapy (sports and participation projects), Immunology (concerning FVIII inhibitor development and immune tolerance induction in hemophilia, neutrophil development and function), Pediatric endocrinology: long term sequelae of chronic disorders, fertility, Gynaecology: bleeding disorders in women and girls, and Pediatric Oncology (Princess Maxima Center): inherited bone marrow failure syndromes, stem cell transplantation. 

Physical and Mental Development uitklapper, klik om te openen

Though different in nature, our benign hematological conditions share several characteristics that are related to physical and mental challenges for the patient. Throughout our research themes, we have incorporated long-term studies in the areas of quality of life, therapy adherence, self-management skills and acceptance of the disease in which pediatric hematologist Kathelijn Fischer fulfills a major role. Concerning physical activities, we perform sports-studies in hemophilia supervised by Kathelijn Fischer and Janjaap van der Net and studies focusing on “Physical Literacy” together with ‘WKZ Sportief’ in children with a variety of chronic hematological conditions (Marije Bartels with Johannes Noordstar and Erik Hulzebos).   

Patient participation uitklapper, klik om te openen

We have installed several patient advisory boards in which we encourage our patients to actively participate in the design of new studies and grant proposals. As we value the insights of our patients in defining new research topics, we also periodically invite them for open brain storm sessions about potential missing themes in our research lines. The advisory boards may consist of patients from our own hospital and/or supplemented with members of the patient societies such as the Dutch Society for Haemophilia Patients (NVHP), OSCAR Nederland, Stichting Shwachman Support Holland, and the Foundation for Rare Blood Disorders (Stichting Zeldzame Bloedziekten, SZB).

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