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Table 3 Stages of TSC clinic development

From: A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report

Stage of Clinic Development Services Provided
Maturity Level 1 • Care coordinator
o Schedule appointments and investigations
o First point of contact for advice
• Lead Clinician
o With TSC interest and expertise
o Created referral pathways
• Close collaboration with patient/family organizations
Maturity Level 2 • Care provided jointly by a core group of TSC-knowledgeable physicians from relevant specialtiesa
• MDTs to review cases and agree on management plans
• Facilitate advice and care from a broader network of specialties and from a wider geographic area than the clinic can provide
• Establish links with other TSC clinics (via MDTs or other joint meetings for peer-to-peer continuing education)
• Formalize surveillance for TAND problems, e.g., using the TAND checklist
• Use database to facilitate monitoring of patients
Maturity Level 3 • Work with larger network of local TSC-knowledgeable specialists; within the same care provider or closely allied care providers
• Establish and promote local and regional network of specialists and care providers; acting as expert center providing advice and at least annual holistic review
• Provide expertise for review of mental health and coordination of referrals for mental health problems
Maturity Level 4 (Center of Excellence) • All the above, plus engage with research into TSC
  1. MDT multi-disciplinary team, TAND TSC-associated neuropsychiatric disorder, TSC tuberous sclerosis complex
  2. aSpecialties useful in providing TSC services: pediatrics, genetics, diagnostic radiology, interventional radiology, cardiology, pediatric/adult neurology, respiratory medicine, pediatric/adult nephrology, dermatology, neurosurgery, oncology, fetal medicine, urology, ophthalmology, psychiatry, psychology, intellectual disability specialists, surgery