The UK Register of stored ovarian and testicular tissue (UKSTORE) keeps information in a confidential database on everyone in the UK who has had ovarian or testicular tissue preserved between the ages of 0-24.
Information stored in the database will support service development, evaluation and research, e.g. by tracking fertility outcomes and fertility preservation uptake.
Having a central resource of accessible information will help us understand more about how to look after children and young people who are storing ovary and testicular tissue and how the tissue is used in the future.
Treatments for illnesses like cancer can cause harm to other parts of the body. As a result, up to 1 in 3 young people who have treatment suffer damage to their ovaries or testicles. This damage can stop them being able to make a baby in the future. However, children can now freeze some ovary or testicle tissue before they start treatment and use it later to have a baby.
We need to learn more about the best way to look after children and young people who have some testicle or ovary tissue stored. For example, we need to know:
- How many patients are storing tissue
- What kinds of patients are storing tissue
- How it helps or doesn’t help patients
- How patients are using their stored tissue
Patient care
Every patient should receive good quality care that is tailored to their specific needs. However, there is no standardised reproductive care pathway to support people with stored fertility tissue. A sub-project on care after fertility tissue preservation will gather information from patients, parents and healthcare professionals to help design reproductive care after fertility tissue preservation.