The protection and preservation of fertility is particularly important for patients with tumor diseases prior to cell-damaging therapies, especially in pediatric oncology and during stem cell transplantation.
Fertility preservation in CAYA (Children, Adolescents, and Young Adults) remains a topic that receives limited attention in everyday clinical practice. While it has been addressed in pediatric oncology for years, it is often inconsistently implemented in daily ward routines and rarely adheres to clinical guidelines.
A rational strategy for fertility-preserving and endocrinological follow-up care should consider not only the therapeutic modalities employed in light of the patient's underlying disease but also the age and gender of the patient at the time of therapy.
The structured documentation of critical risk factors for the manifestation of fertility-restricting endocrinological late effects, as well as precise longitudinal documentation, are therefore of immediate importance in clinical patient care. They ensure the quality of diagnostic and therapeutic processes and outcomes and enable both retrospective and prospective scientific investigations.
The following key questions are central to this effort:
1. Can predictive factors or combined predictor variables for fertility disorders during follow-up be developed based on detailed clinical and laboratory phenotyping of patients before and after exposure to gonadotoxic therapies (e.g., therapeutic exposures, endocrinological markers, anthropometric markers such as body composition, genetic predispositions including risk SNPs and epigenetics)?
2. What unmet needs, concerns, and challenges regarding potential fertility impairments exist in different CAYA age groups and their parents, and how do these unmet needs affect the fertility-related quality of life of those affected?
3. How can current practices in fertility preservation and counseling for fertility preservation be systematically captured, with the goal of improving clinical care structures (healthcare research)?
These research questions will be addressed within the framework of a multimodal research program, specifically through:
1. Development and implementation of a database for the structured collection of therapy-related endocrinological, anthropometric, and laboratory parameters of patients before and after oncological therapy (or stem cell transplantation), as well as during follow-up care at the Department of Pediatrics and Adolescent Medicine, University Medical Center Ulm, Germany.
2. Identification of predictors for fertility disorders:
1. Therapeutic exposures during primary and secondary therapy
2. Endocrinological markers
3. Anthropometric markers (body composition)
4. Genetic predispositions
3. Prospective evaluation of the prevalence and cumulative incidence of fertility disorders in boys and girls during childhood and adolescence, including endocrinological and metabolic late effects.
4. Documentation of medical interventions, such as fertility-preserving measures before therapy, endocrinological treatments for late effects, and reproductive medical measures to support future parenthood (e.g., ICSI, IVF, IUI, oocyte transfer, etc.).
5. Assessment of previous fertility-preservation measures and counseling efforts for fertility preservation. The long-term goal is to improve the quality of patient care in endocrinological follow-up, focusing on fertility-related parameters after oncological diseases through the structured collection of relevant data.
6. Evaluation of fertility-related quality of life and informational needs at different time points during the course of the disease.
FeProCAYA is a part of the collaborative research project FePro-Ulm (https://www.uniklinik-ulm.de/frauenheilkunde-und-geburtshilfe/schwerpunkte/unifee/standard-titel.html), which is funded by the German Federal Ministry of Education and Research (BMBF). FePro-Ulm is an interdisciplinary junior scientists research center for fertility protection and one of five German CERES Excellence Centers for reproductive health (https://www.gesundheitsforschung-bmbf.de/de/interdisziplinaere-nachwuchszentren-fuer-reproduktive-gesundheit-16739.php).
