Table 2.

Top 16 most important aspects to implement in a multidisciplinary TSC team

		Mean Score	SD
1	Identification of a patient care coordinator (nurse or other professional) for duties including case management, answering questions, direct contact with patient, triage for specialists, etc.	9.2	1.1
2	Creation of a list of health care professionals associated with the clinic involved in management of patients with TSC, including their current email, phone number, and availability to see patients	8.7	1.6
3	Identification of a lead physician (with at least 1 or 2 deputies) who takes medical responsibility for the patients’ overall care and managerial responsibility for organizing the clinic	8.4	1.1
4	Organization/identification of care pathway in the clinic and establishing investigation schedule according to patient age (to avoid multiple visits to the hospital)	7.9	1.1
5	Following accepted TSC guidelines/protocol	7.7	2.4
6	Identification of a network of local or regional health care professionals outside of the clinic	7.5	1.2
7	Creation of a plan for diagnosis and management of TSC psychiatric comorbidities (e.g., TAND, autism)	7.4	2.0
8	Establishment of a patient database for case management and research	7.2	1.5
9	Creation of TSC center of excellence for complex cases	6.8	2.6
10	Creation of a plan for transition from pediatric to adult care, including specified age of transition, steps taken, and identification of health care professionals for adult care	6.7	2.4
11	Establishment of MDT meetings that include case discussion, discussion of guidelines, logistics	6.6	1.6
12	Creation of a prenatal diagnosis program (i.e., identifying cardiac tumors)	6.5	2.7
13	Ability to perform investigation imaging such as MRI and CT under sedation (or possibly general anesthesia)	6.4	2.7
14	Establishment of a link between clinic and local patient/family TSC organizations—ideally have a representative of TSC organization present at clinics	6.3	1.7
15	Establishment as a source for dissemination of information on TSC for patients and health care professionals, including any appointments, reports, etc.	6.2	1.1
16	Establishment of communication with patient’s primary care physician and other family physicians to clarify responsibilities	5.9	1.6

CT computed tomography, MDT multi-disciplinary team, MRI magnetic resonance imaging, SD standard deviation, TAND TSC-associated neuropsychiatric disorder, TSC tuberous sclerosis complex