Initiating an Educational Series on Tuberous Sclerosis Complex (TSC) for Patients and Their Families

Objective:
The primary objective of this educational series is to empower patients and their families with knowledge and resources related to TSC. It aims to increase understanding about TSC, its symptoms, treatments, and management strategies. Additionally, it seeks to foster a supportive community for individuals affected by TSC. As team of health care professionals working with TSC patients ,we are initiating a needs assessment survey aimed at better understanding and addressing the specific gaps and challenges identified by our patients and their families.

TSC Educational Series Committee:
·       Maria Zak, Nurse Practitioner, The Hospital for Sick Children
·       Dr Mark Keezer, CHUM, Montreal, Quebec
·       Dr. Maryam Nabavi, London Health Sciences Centre, London, Ontario
·       Dr. Robyn Whitney, McMaster University, Hamilton, Ontario

Question Title

* 1. Are you interested in an educational TSC series for patients and families?

Yes

Question Title

* 2. Please select the proposed session topics you want to hear about:

Overview of TSC and its genetic underpinning.

Examining Medical Interventions for Epilepsy Associated with TSC

Exploring Surgical Approaches for Managing Epilepsy Associated with TSC

Monitoring and Surveillance Strategies for Patients with TSC

Transitioning into Adult Care for TSC Patients

Addressing Kidney-Related Symptoms and Their Management in TSC Patients

Introduction to TAND (TSC-Associated Neuropsychiatric Disorders)

Tuberous Sclerosis Complex and Autism Spectrum Disorder

Review how TSC can affect other systems, such as the lungs, heart, eyes and skin

Promoting Reproductive Health and Well-being in adolescents with TSC

Exploring Available Support and Information Resources for Canadian TSC Patients

Delving into Current Trends and Recent Advances in TSC Research

Other (please specify)

Question Title

* 3. Which time slot is most convenient for you, allowing for a 30-minute topic introduction followed by a discussion?

Morning

Afternoon

Evening

Question Title

* 4. What frequency or interval do you prefer for these rounds?

Quarterly

Every 6 months

Once a year