Over the past decades various aspects in the dynamic field of family and unrelated donor selection and stem cell donation have been settled. Stem cell sources have been expanded from bone marrow to the use of mobilised hemopoietic 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 from scratch been structurally undertaken, as demanded by international regulation. However, for family donors long term follow up studies were mainly performed in retrospect, and cohorts are often small. The lack of well-documented pre-donation conditions for donors has demonstrated 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
Chapter 1
General introduction in stem cell donation and the search for a stem cell donor.
Chapter 2
Family donor care management: principles and recommendations.
Chapter 3
Allogeneic hematopoietic stem cell donation: standardised assessment of donor outcome data. A WBMT consensus document.
Chapter 4
Clinical outcomes after Peripheral Blood Stem Cell Donation by related donors: a Dutch single center cohort study.
Chapter 5
Donor safety: the role of the WMDA in ensuring the safety of volunteer unrelated donors: clinical and ethical considerations.
Chapter 6
Managing a dual role – experiences and coping strategies of parents donating haplo-identical G-CSF mobilised peripheral blood stem cells to their children.
Chapter 7
Immediate and long term somatic effects and health related quality of life of bone marrow donation during early childhood. A single centre report in 210 paediatric donors.
Chapter 8
The importance of identifying a back-up donor for unrelated stem cell transplantation.
Chapter 9
The increase of the global donor inventory is of limited benefit to patients of non-Northwestern European descent.
Chapter 10
Remuneration of haematopoietic stem cell donors: principles and perspective of the World Marrow Donor Association.
Chapter 11
Summary, general discussion and future perspectives.
Chapter 12
Samenvatting en Discussie.
Appendices
Dankwoord, Curriculum Vitae, List of publications, List of Abbreviations, List of co-authors.