Table 2: General principles for the management of patients with MPS VI |
all |
Table 3: Recommended routine monitoring and assessments in patients with MPS VI |
all |
Table 4: Guidance statement for galsulfase |
geneticist, metabolic physician, paediatrician, nurse, physiotherapist |
Table 5: Guidance statements for HSCT |
anaesthetist, bone marrow transplant expert/hematopoietic stem cell transplant expert, geneticist, paediatrician, nurse |
Table 6: Guidance statements for continuous positive airway pressure (CPAP), non-invasive positive pressure ventilation (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 statements for decompression of the median nerve, tenosynovectomy and pulley release |
anaesthetist, geneticist, hand surgeon, orthopaedic surgeon, neurosurgeon, paediatrician |
Table 12: Guidance statement for cardiac valve replacement and left ventricular apical aneurysms |
anaesthetist, cardiologist, geneticist, paediatrician |
Table 13: Guidance statements for tonsillectomy and/or adenoidectomy, tracheostomy and insertion of ventilation tubes |
anaesthetist, geneticist, ear-nose-throat specialist, paediatrician, respiratory physician/pulmonologist |