Table 1 Clinical areas of focus and recommended speciality focus

Table 2: General principles for the management of patients with MPS IVA

all

Table 3: Recommended routine monitoring and assessments in patients with MPS IVA

all

Table 4: Guidance statement for elosulfase alfa

geneticist, metabolic physician, paediatrician, nurse, physiotherapist

Table 5: Guidance statement for HSCT

anaesthetist, bone marrow transplant expert/hematopoietic stem cell transplant expert, geneticist, paediatrician, nurse

Table 6: Guidance statements for CPAP, NIPPV, oxygen supplementation and hypercapnia monitoring

anaesthetist, ear-nose-throat specialist, geneticist, paediatrician, respiratory physician/pulmonologist, nurse

Table 7: Guidance statements for anaesthesia

all

Table 8: Guidance statements for hip reconstruction, hip replacement and growth modulation surgeries

anaesthetist, geneticist, orthopaedic surgeon, neurosurgeon, paediatrician, physiotherapist

Table 9: Guidance statements for decompression of the spinal cord, spinal stabilisation and thoracolumbar kyphoscoliosis

anaesthetist, geneticist, orthopaedic surgeon, neurosurgeon, paediatrician, physiotherapist

Table 10: Guidance statement for corneal transplantation

anaesthetist, geneticist, ophthalmologist, paediatrician

Table 11: Guidance statement for cardiac valve replacement

anaesthetist, cardiologist, geneticist, paediatrician

Table 12: Guidance statements for tonsillectomy and/or adenoidectomy, tracheostomy and insertion of ventilation tubes

anaesthetist, geneticist, ear-nose-throat specialist, paediatrician, respiratory physician/pulmonologist