Royal London is the first centre in the world to be running a clinical trial of a new oral medication for people with HAE.
Royal London immunology department are enrolling patients for a trial of an oral drug for acute attacks of HAE. The hope is for this drug to control HAE attacks early enough to prevent a full blown swelling. If effective, this would be ideal for patients who are not keen on taking regular medications or using injections for acute treatment.
Male or female patients over 18 years of age, with HAE type 1 or 2 are eligible to be considered for recruitment unless their nearest immunology centre is also planning to run this trial. The medication is to be used as soon as the patient notices the beginning of an HAE attack.
Any patients with 2 or more attacks in 93 days are eligible for this trial. If you are on a prophylactic (preventative) medication (e.g. Danazole, Oxandrolone or Tranexamic acid, regular C1 esterase Inhibitor), you will be asked to stop this before the trial and restart after the trial is completed. The length of time needed for stopping prophylactic medication is varied for different medications.
You would have 4 visits to the clinical research facilities at the Royal London Hospital for the purposes of this trial. There will be a fee of £200 per visit for your time in addition to travel and accommodation if required.
If you are interested to know more, please contact Dr Sorena Kiani on BHNT.Advice-Immunology-Barts@nhs.net.
One of our members, Philippa Adams, completed a University dissertation on HAE, titled ‘The Lived Experience of Women Who Have Hereditary Angioedema’
You can read her dissertation here.
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