This page provides patients and families with information about the givinostat early access programme and accessing the medicine as a patient at Evelina London Children's Hospital.
What is the givinostat early access programme?
Givinostat is a potential treatment for Duchenne muscular dystrophy (DMD) that has been developed by the pharmaceutical company Italfarmaco.
This medicine had some positive results in clinical trials. It has been approved by the Medicines and Healthcare products Regulatory Agency in the UK and is awaiting a decision from the National Institute of Heath and Care Excellence (NICE) as to whether it will be made available to patients on the NHS.
In the meantime, Italfarmaco have made the decision to fund the medicine for eligible patients through an early access programme.
Givinostat early access programme at Evelina London Children's Hospital
Evelina London is participating in the givinostat early access programme. This means we can offer givinostat to eligible children with DMD in our clinic.
The givinostat early access programme is for ambulant patients only. This means children who can walk or at least stand.
We can only offer givinostat to current Evelina London patients. We cannot accept referrals from other hospitals.
Read our patient information leaflet about the givinostat early access programme (PDF 249KB).
Keeping families informed about givinostat
We are updating families with any important information we receive that may impact their decision to participate in the givinostat early access programme.
Following some recent information received from the manufacturer, the Northstar Network UK has published an update on the Duchenne UK and Muscular Dystrophy UK websites.
Northstar Network UK is a clinical network of consultants, physiotherapists and other healthcare professionals who look after patients with DMD from 23 specialist centres across the UK.
If you have any questions
If your child is currently a patient at Evelina London and you have any questions about givinostat, please email gstt.evelinaneurocns-smb@nhs.net.