Summary

Acute leukaemia (AL) is an aggressive but potentially curable cancer that can affect women of childbearing age. When a pregnancy is complicated by a diagnosis of AL, clinicians face a complex dilemma: to balance risking the mother's survival through delaying treatment, against the potential harm to the foetus through exposure to cancer drugs. Reports suggest that, providing the first trimester is avoided, successful treatment of AL during pregnancy is possible, and considered safe. However, there is currently no standard approach to treatment of these women.

This observational study will establish a UK-wide registry to specifically monitor the management of AL, or high-risk myelodysplasia (MDS) in pregnancy, and the associated outcomes for both the mother and neonate. It will also document pregnancies conceived post treatment. An initial retrospective component will also collect data on cases since August 2009.

Ultimately, this study will be used as a reference from which to derive firm recommendations for the management of these patients, to better inform future patterns of care.

Accessing cases without consent

For historical cases where the patient is no longer in active follow-up with the hospital, HHTU have applied for permission to access data without consent. For more details about this, please refer to the Patient Notification and Privacy Notice below. If you think that you may have been an eligible case, this explains how you can find out if you have been included in the dataset and how to raise any questions or objections you may have on the use of your information.

If you are a patient or a member of the public with experience in this area and would be interested in joining a group to help shape the ongoing development of the database and how we handle this data, please contact Matt Northgraves (01482 463373) who would be happy to discuss this with you.