Fertility Preservation Guidelines and Education


Guidelines are essential for bridging the gap between research and clinical findings, yet there are currently no European guidelines for fertility preservation in childhood cancer patients. Led by Dr. Leontien Kremer at the Academic Medical Centre, Amsterdam (AMC), PanCareLIFE is establishing guidelines to help survivors, families and health care providers to deliver the best guidance for fertility preservation, both before therapy and in later life. Also involved in the guidelines work is Anna Font-Gonzalez, who has won a SIOP Young Investigator Award for her work.

In the first two years of the project, the WP2 team assembled groups of international experts from the Netherlands, Germany, the United States, Switzerland, Turkey, Italy, Belgium, the United Kingdom, Sweden, Australia, New Zealand, France and the Czech Republic. The experts worked together to identify and evaluate current recommendations for fertility in male and childhood survivors. They have published a paper in the journal Cancer describing what they have learned about existing recommendations. Based on the current guidelines, the groups found areas where the guidelines could be improved, as well as areas where there were no guidelines available. In the third year of the project, the expert working groups developed the clinical questions that they used to search the literature to develop new guidelines. In the fourth year of the project, the expert groups performed searches in medical literature databases and they selected the relevant scientific articles or (chapter) books according to a previously agreed criteria. To minimize the possibility of errors in doing this selection, every record found was assessed separately by two reviewers. Currently, the expert groups are busy summarizing the information found from every record. This is also done by two reviewers and checked by a third one to avoid possible mistakes. Once this step is completed, the expert groups will grade the evidence found and translate the findings into recommendations.

From left to right: Dr. Leontien C Kremer, WP2 leader (Academic Medical Center, the Netherlands); Dr. Marianne van de Wetering, Chair of male group (Academic Medical Center, the Netherlands); Dr. Lisa Kenney, Co-chair of male group (Children’s Hospital and Dana-Farber Cancer Institute, Harvard Medical School, Boston, Massachusetts, US); Dr. Wim Tissing, Chair of female group (University Medical Center Groningen, the Netherlands); Dr. Jennifer Levine, Co-chair of female group (Weill Cornell Medicine, New York, US)

From left to right: Anna Font-Gonzalez, Project coordinator (Academic Medical Center, the Netherlands); Erik Loeffen, Project co-coordinator (University Medical Center Groningen, the Netherlands)


PanCareLIFE is also assessing an intervention designed to improve education of patients and parents on fertility risks and preserving measures. The intervention consists of age-appropriate and gender-specific flyers and brochures and has been developed with input from clinicians, survivors and their parents. The study will test the efficacy of the intervention to increase knowledge, empowerment and uptake of fertility-preserving measures in female and male cancer patients diagnosed between ages 13 and 18. This work is being led by Dr. Anja Borgmann-Staudt with the help of Elisabeth Korte and Ralph Schilling at Charité Universitätsmedizin Berlin (CU).

Dr. Anja Borgmann-Staudt, Elisabeth Korte and Ralph Schilling, Charité Universitätsmedizin Berlin

In the first two years of the project, survivors were recruited to the control group of the study in Austria, Czech Republic, Germany and Poland. In the third year of the project, survivors are now being recruited to the intervention group.