Walsall Healthcare has been chosen as one of only three sites in the UK for a major clinical trial to find a treatment for a rare genetic skin condition.
Enrolment for adults and children with Netherton’s Syndrome has already started with patients from the West Midlands and the North of the UK travelling to Walsall Manor Hospital to take part.
This research trial aims to assess a treatment which specifically target the disease’s symptoms which causes patients to have permanently widespread red, scaly skin, brittle ‘bamboo’ hair, allergies and poor immune systems.
Dr James Halpern, Consultant Dermatologist for Walsall Healthcare NHS Trust, is the Principal Investigator in Walsall.
He said: “Netherton’s Syndrome has lifelong implications for patients. The symptoms are often widespread, covering the whole body, which is itchy and inflamed.
“The severity causes babies to leak nutrients which often results in a failure to thrive. Patients are typically underweight, have reduced height and are significantly more likely to develop allergies and severe infections. Put simply, it is a really miserable condition to live with which is why any opportunity to get us closer to a licensed treatment is so exciting because it will make such a massive difference.
“We’re excited that Walsall has been chosen alongside St Thomas’ Hospital and Great Ormond Street Hospital to be one of only three sites in the UK recruiting for this pivotal clinical trial.
“Walsall is one of only a few Dermatology units in the country with significant experience in managing this condition and we are passionate about offering this trial to as many participants as we can reach.”
As there is currently no licensed treatment or cure for Netherton’s Syndrome, patients are prescribed moisturisers which have only a limited effect.
“This is why it’s so vital that we conduct research into finding treatments that specifically target this disease so we can try and improve the quality of life for these patients.,” James added.
Patients who are eligible for the trial will receive the lotion for 12 weeks, and if they find it beneficial, they will go into a longer term follow up study until the lotion is licensed for use.
The lotion being investigated is a serine protease inhibitor- a natural ingredient often used in anti-ageing cosmetic products, which in higher concentrations replaces important proteins in the skin which are missing in Netherton’s Syndrome.
Recruitment to this study is ongoing and the team is hoping to reach as many participants as it can within this timeframe. Anyone who is interested in hearing more about the research being carried out in Walsall can email wht.walsall.research1@nhs.net