Dr. Marjon H Cnossen

After completing her medical training at the Faculty of Medicine in Leiden, she started her subspecialty training in pediatrics in Rotterdam, at the Erasmus University Medical Center/Erasmus MC Sophia Children’s Hospital, followed by her fellowship pediatric hematology. She completed her thesis entitled “Neurofibromatosis type 1: A clinical and molecular genetic study”.

Dr Cnossen’s research fields are inherited bleeding disorders, sickle cell disease and thalassemia, patient-reported outcomes (PROs) and patient-experience measures (PREMs), rare diseases in general.

Key Publications

1. van Moort I, Preijers T, Bukkems LH, Hazendonk H, van der Bom JG, Laros-van Gorkom BAP, Beckers EAM, Nieuwenhuizen L, van der Meer FJM, Ypma P, Coppens M, Fijnvandraat K, Schutgens REG, Meijer K, Leebeek FWG, Mathot RAA, Cnossen MH, group O-Cs. Perioperative Pharmacokinetic-Guided Factor Viii Concentrate Dosing in Haemophilia (Opti-Clot Trial): An Open-Label, Multicentre, Randomised, Controlled Trial. Lancet Haematol. 2021;8(7):e492-e502.

2. Cnossen MH, Aarsen FK, Akker SLVD, Danen R, Appel IM, Steyerberg EW, Catsman-Berrevoets CE. Paediatric Arterial Ischaemic Stroke: Functional Outcome and Risk Factors. Developmental Medicine and Child Neurology. 2010;52(4):394-9.

3. Fijnvandraat K, Cnossen MH, Leebeek FWG, Peters M. Diagnosis and Management of Haemophilia. BMJ (Online). 2012;344(7855).

4. Ragni MV, Croteau SE, Morfini M, Cnossen MH, Iorio A, the Subcommittee on Factor Viii FIX, Rare Bleeding D. Pharmacokinetics and the Transition to Extended Half-Life Factor Concentrates: Communication from the Ssc of the Isth. Journal of Thrombosis and Haemostasis. 2018;16(7):1437-41.

5. Hazendonk HCAM, Lock J, Mathôt RAA, Meijer K, Peters M, Laros-van Gorkom BAP, van der Meer FJM, Driessens MHE, Leebeek FWG, Fijnvandraat K, Cnossen MH. Perioperative Treatment of Hemophilia a Patients: Blood Group O Patients Are at Risk of Bleeding Complications. Journal of Thrombosis and Haemostasis. 2016;14(3):468-78.

Current Positions/Chairs:

  • Founder and Chair
    het Sikkelcelfonds
  • Chair
    SophiAlumni club

Key Institutions

  • Erasmus MC Sophia Children’s Hospital
  • Erasmus University Medical Center Rotterdam

Research Activities

  • Principal investigator multi-center international OPTI-CLOT/ To WiN studies
  • Principal investigator interdisciplinary SYMPHONY NWO-NWA consortium; Orchestrating personalized treatment in bleeding disorders (WPs 1-12); 14 fte PhDs and 1 post-doc position
  • Co-investigator DAVID studies, which focus on implementation of pharmacokinetic (PK)-guided dosing of factor concentrates and desmopressin (3x ZonMW, 1x Innovatiefonds
  • Principal investigator: DoReMi studies
  • Co-investigator multicenter DAVID, (HiN), WiN, TiN/ TiNkids, RBiN studies
  • Co-investigator single center CRESCENDO
  • SCORE consortium (Sickle Cell Outcome Research); focusing on: implementation PROs with Dr. L. Haverman, access and cost of care studies, health literacy skills
  • GenoMed4ALL European inititiative - metabolomics
  • Neuroradiological and neuropsychological abnormalities in children with sickle cell disease and a comparison with a cohort of healthy children from Generation R (BRICK study
  • Coordinator Treatment Center of Rare Disease Center Erasmus MC Theme Sophia; Chair: Prof. Dr. A.T. van der Ploeg
  • Initiator and principal investigator Rare Disease Innovation Center; application Convergence Flagship call 2022

Research Interests

  • Adherence to therapy
  • Lower health literacy
  • Patient-reported outcomes
  • Neuroradiological and neuropsychological outcomes in sickle cell disease
  • Pharmacokinetic-guided dosing of medication, especially in bleeding disorders