Aim
Creation of a central information resource to facilitate national service evaluation / audit and research pertinent to fertility preservation for young people.
The UKSTORE will comprise a population-based register of all individuals who have undergone or are currently undergoing tissue preservation in the UK between the ages of 0-24 years, including clinical and socio-demographic information relevant to their reproductive health.
Primary endpoints:
1. The establishment of a comprehensive, centralised repository of quality-assured information on all people who have ever undergone, or prospectively undergo, testicular or ovarian tissue preservation in the UK between the age of 0-24 years.
Ovarian tissue cryopreservation is now considered standard care in some situations; however testicular preservation is not. Patient characteristics, cryopreservation uptake and reproductive outcomes have not been well studied in children and young people. Thus, our primary endpoint is to create a registry of clinical data suitable for statistical analysis which can be used to address key clinical questions such as:
- What is the uptake of tissue preservation amongst 0–24-year olds in the UK?
- How has uptake of tissue preservation this changed over time?
- Which sociodemographic groups are underrepresented?
- What is the risk of malignant disease recurrence for cancer survivors who transplant cryopreserved testicular or ovarian tissue?
- How do patient characteristics compare between those that successfully undergo tissue preservation vs those that do not?
- Does storing testicular or ovarian tissue impact reproductive function or reproductive outcomes?
- What is the risk of infertility following gonadotoxic treatment and can this be used to support informed clinical decision making?
- What are the reproductive outcomes of patients who have used cryopreserved testicular or ovarian tissue?
2. The ability to support (a) electronic data feeds from participating centres and (b) data linkage between the routinely collected health data on individuals on UKSTORE and other relevant datasets.
Secondary endpoints:
1. Establish a research database resource to support population-based audit, service development, quality improvement initiatives and research e.g., long-term outcomes, patient reported outcomes.
UKSTORE will contain a comprehensive, centralised repository of quality-assured data suitable for longitudinal follow up of patient outcomes over time.