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7th March 2022

Patient and Carer meeting to discuss proposal for a UK register of stored ovarian and testicular tissue

DATA-CAN is working with the University of Leeds to help organise an online workshop to discuss a proposal for a UK Register of stored ovarian and testicular tissue.

The proposal for a UK register of stored ovarian and testicular tissue is a project is from a research team at the University of Leeds, led by Adam Glaser, Professor of Paediatric Oncology and Late Effects and is in liaison with DATA-CAN and use MY data. The aim is to create a national register of everyone in the UK ages 0-25 who has, or chooses to have, tissue preserved for future fertility.

We are looking for a group of between four and ten patients and carers (patients will ideally be aged between 18-25 however this is not essential), to take part in two online sessions to provide feedback and advice to the team on a project. The first session is proposed for Tuesday, 22 March from 16.00-17.00 (timing subject to confirmation). 

Participants will receive £50 payment for each online meeting and a small amount of reading outside of each meeting.  

More information about the project is available in this document.

If you are interested in this opportunity, please send an expression of interest to by the end of Sunday, 13 March.  Please include a brief outline of your interest in the Register – eg you may be a relative or carer of a young person affected by this, or you may have been affected yourself. 

If you have any queries about the Register itself, please contact Rebecca Mottram  Rebecca is a Senior Research Nurse in the NHS and part of the research team. The third member of the team is Richard Feltbower, Professor of Epidemiology.