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PubMed This is a summary of 23 peer-reviewed journal articles Updated
Primary Care

Building Your Care Team and Preparing for Visits

At a Glance

Because tuberous sclerosis complex can affect several organs over time, care is best coordinated by a multidisciplinary TSC team. A specialized clinic can organize guideline-based monitoring, while complete imaging, genetic, EEG, kidney, and TAND records help guide each visit.

Tuberous Sclerosis Complex (TSC) is a lifelong, multisystem condition. Because it can affect the brain, kidneys, heart, lungs, and skin at different stages of life, care cannot be managed by a single doctor. Instead, you need a “medical home”—a multidisciplinary team where specialists work together rather than in isolation [1][2].

While you may coordinate many of the day-to-day appointments, having a specialized team ensures that no organ system is overlooked, treating the whole patient [3]. It also ensures your care follows the most current international guidelines [4].

Your Multidisciplinary Team

A comprehensive TSC team is built around a “core” group of specialists, with others brought in as needed based on your specific symptoms [1]. Not every patient needs every specialist.

The Core Team

  • Primary Care Provider/Pediatrician: Essential for general wellness and routine screenings.
  • Neurologist/Epileptologist: Often the “lead” doctor, responsible for managing seizures, monitoring brain growths, and coordinating overall care [5].
  • Nephrologist or Urologist: Focuses on kidney health, monitoring for tumors (AMLs) and cysts, and managing blood pressure [6].
  • Geneticist/Genetic Counselor: Helps interpret testing results, explains inheritance patterns, and coordinates testing for family members [7][8].
  • Dermatologist: Performs annual skin checks to manage angiofibromas and other TSC skin features [9].

The Extended Team

Depending on your needs, you may also see:

  • Pulmonologist: For adult women at risk for lung disease (LAM) [10].
  • Ophthalmologist: To monitor for retinal hamartomas [11].
  • Cardiologist: To monitor heart tumors in infants [12].
  • Neuropsychologist/Psychiatrist: To screen for and treat behavioral or learning challenges (TAND) [1][13].
  • OB/GYN or Reproductive Specialist: For contraception, pregnancy planning, and hormone decisions.
  • Social Worker/Patient Navigator: To assist with school accommodations, insurance, and care coordination.

Finding the Right Center

Patients who receive care at dedicated TSC clinics often have improved access to specialized treatments like epilepsy surgery [14][15].

When evaluating a doctor or center, look for these hallmarks of expertise:

  • Consensus-Based Care: They should use a surveillance plan matching the 2021 international guidelines [16].
  • TAND Screening: They should routinely use the TAND Checklist or TANDem tool at every annual visit, not just when a problem is reported [17][18].
  • Transition Planning: If you are in a pediatric program, they should have a clear plan for moving care to adult specialists who understand TSC [19].

What to Bring to Your First Visit

To get the most out of a specialized evaluation, your medical team needs raw data [20]. Essential records include:

  1. Imaging Data: Ask the center about secure electronic image transfer of your MRI or CT scans (DICOM images). If not possible, bring them on a CD. Do not rely solely on “the portal” or printed reports [12].
  2. Full Genetic Reports: Bring the actual laboratory report from the testing company. This contains critical details about the specific mutation and the testing method used (e.g., looking for mosaicism) [8][21].
  3. EEG Reports: If you or your child has epilepsy, bring the most recent EEG findings and a list of all seizure medications (past and present) [22].
  4. Baseline Lab Work: Recent results for kidney function (eGFR) and urine protein levels [23].
  5. TAND Checklists: If you have completed a TAND screen at home or with another provider, bring a copy to start the conversation about behavioral or educational needs [18].

By helping your team gather these records, you empower them to make decisions based on the full history of the disease [12].

Common questions in this guide

Which specialists should be on a TSC care team?
The core team usually includes a primary care clinician or pediatrician, neurologist or epileptologist, nephrologist or urologist, geneticist or genetic counselor, and dermatologist. Depending on the person's needs, the team may also include a pulmonologist, ophthalmologist, cardiologist, behavioral health specialist, reproductive specialist, social worker, or patient navigator.
How can I find a specialized TSC clinic?
Look for a multidisciplinary center that follows international TSC surveillance guidelines and coordinates specialists rather than treating each organ separately. Ask whether the center performs routine TAND screening and has a plan for transition from pediatric to adult care.
What records should I bring to my first TSC appointment?
Bring the actual MRI or CT image files when possible, preferably through secure electronic transfer or on a CD, not only printed reports. Also bring the full genetic laboratory report, recent EEG results and seizure medication history, kidney function and urine protein results, and any completed TAND checklist.
Why is a TSC care coordinator important?
A designated coordinator or lead clinician helps combine reports from different specialists into one shared care plan. This can make it easier to schedule age-appropriate monitoring, share records, and avoid gaps between appointments.
What should I ask about my child's transition to adult TSC care?
Ask the pediatric program to explain when and how care will move to adult specialists familiar with TSC. Request a written monitoring calendar, a current provider list, and a plan for transferring imaging, genetic results, medication history, and other records.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with TSC do you personally manage, and how many does this center see annually?
  2. 2.Who is the designated care coordinator or lead physician who will integrate all my (or my child's) specialist reports into one master plan?
  3. 3.Do you have a formal referral pathway for specialists experienced in TSC-related surgery, such as epilepsy surgery or selective arterial embolization for kidneys?
  4. 4.Can you provide a written, age-specific surveillance calendar that tells us exactly which tests are due and when?
  5. 5.How do you handle the transition from pediatric to adult care to ensure there are no gaps in monitoring?

Questions For You

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References

References (23)
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    A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report.

    Auvin S, Bissler JJ, Cottin V, et al.

    Orphanet journal of rare diseases 2019; (14(1)):91 doi:10.1186/s13023-019-1072-y.

    PMID: 31039793
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    Beyond the Guidelines: How We Can Improve Healthcare for People With Tuberous Sclerosis Complex Around the World.

    Stuart C, Fladrowski C, Flinn J, et al.

    Pediatric neurology 2021; (123()):77-84 doi:10.1016/j.pediatrneurol.2021.07.010.

    PMID: 34416612
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    Neurological and neuropsychiatric aspects of tuberous sclerosis complex.

    Curatolo P, Moavero R, de Vries PJ

    The Lancet. Neurology 2015; (14(7)):733-45.

    PMID: 26067126
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    Tuberous Sclerosis Complex: new criteria for diagnostic work-up and management.

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    Wiener klinische Wochenschrift 2015; (127(15-16)):619-30 doi:10.1007/s00508-015-0758-y.

    PMID: 25860851
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    Seminars in pediatric neurology 2021; (37()):100875 doi:10.1016/j.spen.2021.100875.

    PMID: 33892851
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    Clinical practice recommendations for kidney involvement in tuberous sclerosis complex: a consensus statement by the ERKNet Working Group for Autosomal Dominant Structural Kidney Disorders and the ERA Genes & Kidney Working Group.

    Mekahli D, Müller RU, Marlais M, et al.

    Nature reviews. Nephrology 2024; (20(6)):402-420 doi:10.1038/s41581-024-00818-0.

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    Genetics of tuberous sclerosis complex: an update.

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    TSC2 pathogenic variants are predictive of severe clinical manifestations in TSC infants: results of the EPISTOP study.

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    Dermatological manifestations of tuberous sclerosis complex (TSC).

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    PMID: 28598544
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    Tuberous sclerosis complex presenting as pulmonary lymphangioleiomyomatosis--a clinicoradiological diagnosis.

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    Ophthalmic manifestations of tuberous sclerosis: a review.

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    PMID: 27447981
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    A Review of Investigations for Patients With Tuberous Sclerosis Complex Who Were Referred to the Tuberous Sclerosis Clinic at The Hospital for Sick Children: Identifying Gaps in Surveillance.

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    Pediatric neurology 2020; (102()):44-48 doi:10.1016/j.pediatrneurol.2019.06.018.

    PMID: 31362847
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    Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem).

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    Frontiers in psychiatry 2022; (13()):834628 doi:10.3389/fpsyt.2022.834628.

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    Diagnostic flow analysis of tuberous sclerosis complex in Japan: a retrospective claims database study.

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    Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations.

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    PMID: 34399110
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    Involvement of mental health professionals in the treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey.

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This page is for informational purposes only and does not constitute medical advice. Your TSC care team can tailor specialists, records, and surveillance to you or your child.

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