Could a cancer drug help kids with rare brain disorder?

NCT ID NCT05577754

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This phase 2 trial tests alpelisib, a drug originally developed for cancer, in 20 people aged 2 to 40 with MCAP syndrome—a rare condition causing an enlarged brain, blood vessel issues, and developmental delays. Participants receive either alpelisib or a placebo for 6 months, then all get the drug for up to 24 months. The goal is to see if it improves daily living skills like communication and socialization.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance

alpelisib (BYL719)

What this could lead to

If it works, this could point toward a treatment that improves daily living skills and brain function in people with MCAP syndrome.

What could go wrong

This is a small, early-phase trial with only 20 participants, so results may not apply to everyone. The drug may cause side effects or fail to show benefit over placebo.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for MEGALENCEPHALY-CAPILLARY MALFORMATION POLYMICROGYRIA SYNDROME (MCAP) are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

hereditary sensory and autonomic neuropathy megalencephaly-capillary malformation-polymicrogyria syndrome neurodevelopmental disorder

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • AP-HP Hôpital Necker-Enfants Malades

    RECRUITING

    Paris, 75015, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • AP-HP Hôpital Necker-Enfants Malades - CIC

    ACTIVE_NOT_RECRUITING

    Paris, 75015, France

  • CHRU Brest

    NOT_YET_RECRUITING

    Brest, 29200, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHRU Nîmes

    RECRUITING

    Nîmes, 30029, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHRU Tours

    RECRUITING

    Tours, 37044, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU Amiens

    RECRUITING

    Amiens, 80054 Amiens, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU Dijon Bourgogne - CIC-P

    ACTIVE_NOT_RECRUITING

    Dijon, 21079, France

  • CHU Rennes

    RECRUITING

    Rennes, 35023, France

    Contact Phone: •••-•••-••••

  • CHU d'Angers

    RECRUITING

    Angers, 49933, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU de Lille

    RECRUITING

    Lille, 59037, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Chu Dijon Bourgogne

    RECRUITING

    Dijon, 21000, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Chu Estaing

    RECRUITING

    Clermont-Ferrand, 63003, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • HCL - Groupement Hospitalier Est Hôpital Femme-Mère-Enfant

    RECRUITING

    Bron, 69677, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••