Case study: Denise’s ENCORE in tests for new lung infection treatment
ENCORE trial of treatment for rare lung infection
The Royal Free Hospital has become the first UK site to recruit to a study into treatment of a rare chronic lung infection.
The “ENCORE” trial is examining how best to treat Nontuberculous mycobacterial (NTM), a lung infection and disease caused by bacteria found in soil and water.
NTM infections are rare (around 7 cases per 100,000 people) and mainly affect people who have damaged lungs or who have a problem with their immune system, but they can sometimes cause health problems for people with no pre-existing condition.
Symptoms are similar to those of other, more common, lung infections and include coughs, and coughing up phlegm or blood, fever, loss of weight and appetite, tiredness, night sweats and increasing shortness of breath.
Some people can carry the bacteria in their airways without it causing problems but for others with existing conditions, symptoms can develop and result in chronic ill health.
The new drug trial will look at newly diagnosed patients who have never been treated for NTM and who have mild to moderate symptoms. Treatment will be with two of the best antibiotics currently available, plus the trial drug - amikacin liposome inhalation suspension, or a placebo.
One of the latest patients to be recruited to the trial is Denise Thompson. Denise has a pre-existing condition called bronchiectasis and received an additional diagnosis of NTM, at a routine appointment at the Royal Free Hospital, recently.
At 73, Denise keeps active and healthy with Ceroc dance and a routine morning swim, but she was regularly plagued by chest infections, requiring antibiotic treatment, and sometimes avoided crowded environments, to reduce her exposure to potential viruses.
She was given the opportunity to join the trial when her NTM was discovered in February 2023 and was keen to take up the offer. She says:
“I didn’t really hesitate in joining the trial. I had heard about research before but had never participated.
“I’ve been on the trial now for five and a half weeks and have had no side-effects so far. The requirements are very simple, with a nebulizer every morning to deliver the antibiotics, and I will continue to do that for 12 months.
“The idea of taking antibiotics for such a long period seemed strange at first but it has boosted my confidence about being in crowded environments and I feel happy and positive about being on the trial. I receive regular checks and everyone is always extremely professional and nice at the Royal Free Hospital.”
Professor Marc Lipman, a respiratory consultant who leads the Royal Free London’s TB and NTM service, said:
“It can often be several years before the diagnosis of NTM disease is made. Even then, current treatments aren’t very effective with a chance of cure of 60-70% following 18 months of standard therapy. Most people with NTM are older and the antibiotics used can be poorly tolerated – meaning that we urgently need new and effective treatments to manage this increasingly common condition.”
Denise does not know if she is receiving the new drugs or a placebo but reports she has been coughing less since starting the trial and is enjoying feeling less susceptible. She says:
“It would be wonderful to think it could help get rid of it (NTM) forever and that may also help the bronchiectasis, by improving my airways. I’m happy to be on the trial and if it improves my health then that’s the icing on the cake”.
For more information about the trial you can contact: firstname.lastname@example.org
For more information on research taking place in your area, visit the Be Part of Research website.