TSA Clinical Trial Recruitment Portal
Register your interest to part in TSC clinical trials
If you or someone you care for has Tuberous Sclerosis Complex (TSC), you can sign up to the TSA Clinical Trial Recruitment Portal
Registration is completely free and you only need to complete the form once. Joining the portal does not commit you to taking part in a clinical trial, but does give you the opportunity to potentially be involved in future trials.
How does it work?
1. Complete the registration form (here)
Tell us about you, or the person with TSC you care for, and the types of clinical trials you would like to hear about.
2. Confirm your choices
Read the consent information and choose how the TSA may use your details and contact you.
3. Hear from us when there may be a match
If a potentially suitable clinical trial becomes available, the TSA may contact you with more information.
You can then decide whether you would like to find out more. You are under no obligation to take part.
Why register?
By joining the TSA Clinical Trial Recruitment Portal, you can:
- Hear about clinical trial opportunities that may match the information you provide
- Choose how and when the TSA contacts you
- Help clinical trial teams better understand the TSC community and plan more accessible trials
Who can register?
You can register if:
- You are an adult with TSC
- You are a parent or carer completing the form for a child with TSC
- You are a carer completing the form for another person with TSC
The registration form will explain what information is needed and who can provide consent.
Your information, your choice
Your information will be stored securely and handled in line with applicable data protection requirements.
The TSA will use the information you provide to help identify clinical trial opportunities that may be relevant to you and to contact you according to your preferences.
Registering does not guarantee that a suitable clinical trial will be available. Your information will not be shared outside the agreed process without an appropriate lawful basis and the permissions described in the registration form.
Frequently asked questions
 No. Registering only means that you would like to hear about potentially relevant clinical trial opportunities.
If the TSA contacts you about a study, you can decide separately whether you would like to find out more or take part.
 Not necessarily. This will depend on the clinical trials available and whether the information you provide suggests that an opportunity may be relevant to you. However, your entry to the portal will be checked from time to time when clinical trials are looking for relevant and appropriate volunteers.
Yes. You can update your contact preferences or withdraw your registration at any time.
The TSA or a clinical trial coordinator may contact you with information about the study and explain the next steps.
The study team will carry out its own assessment and make any formal decision about whether someone is eligible to take part.
For any other questions
If you have any other questions about the TSA Clinical Trial Recruitment Portal, please contact Bethan Vaughan (Senior Research Manager): bethan.vaughan@tuberous-sclerosis.org. Â
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow