mTOR Biobank; Version 1.0

• Research type

  Research Tissue Bank

• IRAS ID

  343546

• Research summary

  mTOR Biobank

• REC name

  Wales REC 3

• REC reference

  26/WA/0053

• Date of REC Opinion

  20 Apr 2026

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  The mTOR Biobank collects and stores samples from children and adults with rare conditions affecting the mTOR pathway, which can cause epilepsy, developmental difficulties and other health problems. With consent, samples are collected during routine clinical care where possible, or at a separate appointment.

  Samples are processed in specialist laboratories and stored securely at the Maurice Wohl Clinical Neuroscience Institute, King’s College London. They are linked to clinical information using a unique code, so that researchers cannot identify individuals. Only authorised staff can access identifiable information.

  Participants (or parents/guardians) provide informed consent and can withdraw at any time. Samples may also include previously collected material from ethically approved studies where consent allows.

• Research programme

  The biobank supports research into rare diseases caused by changes in the mTOR pathway. These conditions are often difficult to diagnose and treat, and current therapies are limited. By providing high-quality biological samples to researchers in the UK and internationally, the biobank enables studies to better understand disease mechanisms and develop new diagnostic tools and treatments. Research may include genetic studies, cell-based models and testing of new therapies. The biobank is part of the Rare Disease Research UK platform and aims to improve outcomes for people living with rare neurological and multisystem conditions.

• Storage license

  12293

• RTBTitle

  mTOR Biobank

• Establishment organisation

  King's College London

• Establishment organisation address

  Maurice Wohl Clinical Neuroscience Institute

  5 Cutcombe Road

  London

  SE5 9RX