Guidance

1 Recommendations

1 Recommendations

1.1 Evidence on the efficacy of open prenatal repair of open neural tube defects in the fetus is adequate in quantity and quality. However, evidence on its safety shows serious but well recognised safety concerns for the mother and fetus. Therefore, this procedure should only be used with special arrangements for clinical governance, consent, and audit or research. Find out what special arrangements mean on the NICE interventional procedures guidance page.

1.2 Clinicians wishing to do open prenatal repair of open neural tube defects in the fetus should:

  • Inform the clinical governance leads in their NHS trusts.

  • Give parents clear written information to support shared decision making, including NICE's information for the public.

  • Ensure that parents understand the procedure's safety and efficacy, as well as any uncertainties about these.

  • Audit and review clinical outcomes of everyone having the procedure. NICE has identified relevant audit criteria and has developed an audit tool (which is for use at local discretion).

1.3 The procedure is technically challenging and should only be done in specialised centres, and only by clinicians and teams with specific training and experience in open prenatal repair.

1.4 Patient selection should only be done by a multidisciplinary team, which should include a consultant in fetal medicine, an obstetric surgeon, a paediatric neurosurgeon, a radiologist with experience in fetal imaging and an anaesthetist.

1.5 Further research should report details of risks to the mother (including her subsequent pregnancies), risks to the fetus (including the need for further surgery) and long-term disability after birth.