X Linked Study based in Birmingham – participants needed from the UK
People with XLI lack steroid sulfatase, a substance with a role in the skin and also in the production of certain hormones. The research team want to learn more about this condition by studying steroid hormone levels in people with XLI, and checking if their physical development is altered.
The research is led by Professor Wiebke Arlt, Consultant Endocrinologist (hormone specialist), Dr Jeremy Kirk, Consultant Paediatric Endocrinologist and Prof Celia Moss, Consultant Dermatologist and member of the ISG Medical Advisory Board.
The research includes one visit to Birmingham Children’s Hospital (expenses will be paid), which takes about one hour. Dr Jan Idkowiak, the research doctor organising the study, will carry out a physical examination and take a blood sample. Before the visit participants will be asked to collect all their urine for one day (a special container is provided). The study has been approved by the Research Ethics Committee and is funded by Birmingham Children’s
Hospital Research Charity.
If you are interested in taking part in this study (UK patients only) and would like to learn more, please contact Dr Jan Idkowiak who will be happy to answer any questions and provide you with information leaflets for parents and patients. Tel: 0121 414 2764 or email: email@example.com