UKSTORE
Research type
Research Database
IRAS ID
315751
Contact name
Adam W Glaser
Contact email
Research summary
United Kingdom REGISTER OF STORED OVARIAN AND TESTICULAR TISSUE
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
22/YH/0157
Date of REC Opinion
20 Sep 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Background: Around 30% of all children receiving gonadotoxic therapy are at risk of fertility impairment. Ovarian or testicular tissue cryopreservation to safeguard fertility is recommended to those most at risk.
Aims: The UK Register of stored ovarian and testicular tissue (UKSTORE) will be a single information resource to support service development, evaluation and research. It will comprise a population-based register of all individuals who have undergone, or undergo, testicular or ovarian tissue preservation in the UK between the ages of 0-24 years. It will include detailed information on diagnosis, treatment, tissue preservation, pubertal development, fertility assessments, tissue use and reproductive outcomes. It will operate at a national level to monitor and report fertility preservation uptake and outcomes via yearly reports to key stakeholders. It will generate data for audit and research, enabling rapid data extraction and knowledge exchange.
UKSTORE keeps some personal information (demographics) and information about:
Illness, treatment and tissue stored.
Overall health.
Whether patients get pregnant or have a baby.
How patients use their tissue.Research programme
We include everyone who has stored some ovary or testicle tissue in the UK between the age of 0-24 years. Patient data will be extracted from collaborators in all UK centres that store ovarian or testicular tissue harvested from people 0-24 years. Disease and treatment data will be extracted from existing disease datasets. Data linkage via trusted sources such as NHS Digital and disease registries will enrich and enhance patient data. All data will be transferred to a secure central electronic repository in Leeds. Subject to future funding, patient reported outcomes will be used to collect longitudinal data. Data will be made available for the purposes of audit and research, according to appropriate regulatory approvals.
Research database title
United Kingdom REGISTER OF STORED OVARIAN AND TESTICULAR TISSUE
Establishment organisation
University of Leeds
Establishment organisation address
Woodhouse
Leeds
LS2 9JT