Focus on the Donor

Over the past decades various aspects in the dynamic field of family and unrelated donor selection and stem cell donation have not yet been settled. Stem cell sources have been expanded from bone marrow to the use of mobilized hematopoietic progenitor cells and stem cells harvested from umbilical cord blood. The immediate effects and long term follow-up of unrelated donors, in particular those exposed to growth factors have been structurally undertaken, as demanded by international regulation. However, for family donors long term follow up studies are mainly performed in retrospect, and cohorts are often small. The lack of well-documented pre-donation conditions for donors demonstrates the need for stricter guidelines for care management of family donors. In this thesis various aspects of stem cell donation underscoring the need for change are described, and include the following studies:

  • A qualitative study on the experience of parents who have donated stem cells to their child
  • A long term follow-up study in children, who have donated bone marrow under the age of 13 years
  • The immediate side effects and long term follow-up of the first Dutch cohort of family donors treated with G-CSF
  • Donor availability between 2001 and 2012 for Northwest European (NWE) and non-NWE patients

About Me

Suzanna M. (Anne-Marie) van Walraven was born in 1958 in Heerlen and grew up in Gouda en Oegstgeest. She attended the Stedelijk Gymnasium and Louise de Coligny Scholengemeenschap in Leiden, and achieved her HAVO diploma in 1977. In the same year she started her career as nurse (Juliana Kinder Ziekenhuis, The Hague, NL 1977-1981) and specialised in anaesthetics (Christelijke Vereniging Het Diaconessenhuis, Leiden, NL, 1981-1985). She worked in the emergency room of the Leiden University Medical Centre (1985-1986) and after the birth of her daughters Sanne (1986) and Leonore (1989) specialised in haematology and paediatric stem cell transplantation (Leiden University Medical Centre, 1990-1997). She served as search coordinator and -consultant at Europdonor Foundation (1997-2006). After finishing her MSc in Nursing (University of Cardiff, 2003), she started a research project for a doctoral dissertation, focusing on different experiences and aspects of stem cell donation and the unrelated donor search. She worked four years in the paediatric stem cell transplantation unit of the Leiden University Medical Centre (2006-2010) as physician assistant in paediatric stem cell transplantation and received her MPA in 2009 (Hogeschool Utrecht). Until 2014 she managed the Transplant Centre Coordination Unit at Europdonor Foundation, the department that is responsible for the unrelated donor searches for Dutch patients.

Since 1998, Anne-Marie is actively participating in the World Marrow Donor Association (WMDA) as member of several subcommittees and taskforces, and chair of the (former) Ethics Working Group. In 2011 she organised the 2nd Donor Outcome Workshop on behalf of the Worldwide Network of Blood and Marrow Transplant in Leiden. In 2012 she was appointed member of the Donor Outcome Committee of the European Group for Blood and Marrow Transplant (EBMT). Anne-Marie is chair of Hematon SCT, a group within the Dutch organisation looking after the interests of patients with blood cancer. Since their foundation in 2012 she is involved in the editorial staff of the Dutch Magazine for Physician Assistants. Currently she is working for the Dutch office for Hemo- and Biovigilance TRIP, and involved in the development of the WMDA eLearning program. In her free time she loves to travel and collect fabric from all over the world for her patchwork and quilt projects.

Sponsors

Support for the costs associated with the publication and distribution of the thesis from Uitgeverij Buro Blauwbrug Publishers, Ontime Onboard Courier GmbH, Medix Publishers and Europdonor Foundation is gratefully acknowledged.

This thesis is also available in the YourThesis app, available here.

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