Information for Clinicians
Clinical Personnel Pages
We recommend referral once the suspicion of severe OI has been raised, prior to invasive testing to obtain a molecular diagnosis. The referral information can be obtained from one of our partners and will be reviewed by a fetal medicine expert and geneticist once completed. If eligible we will contact you to discuss the trial in further detail and then make arrangements to discuss the trial with the patient and offer a screening appointment. At this appointment we will perform a detailed ultrasound and amniocentesis to confirm the clinical and molecular diagnosis. However, if a molecular diagnosis has already been obtained from a different laboratory we can accept these results. The patient will not have to undergo a further invasive procedure for diagnostic purposes.
We ask that you only refer patients to us who wish to consider taking part in the trial. We cannot arrange termination of pregnancy for women who are unable to access this in their referring country.
Care during pregnancy and delivery
We can provide all of the patient's ultrasound appointments in pregnancy, or can arrange to share care with the referring centre. We prefer that delivery takes place at the BOOSTB4 centre. This enables review of the neonate by our specialist paediatric OI team members. It will also enable further consent to be taken from the parents for ongoing participation in the trial and enable us to collect the appropriate delivery samples (for safety assessments).