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Heartbeat: Sickle cell team are first to recruit to ground breaking study

July 13, 2018

One of our patients has become one of the first in the world to take part in ground breaking research into a new wonder drug to treat sickle cell.

Marie-Claire Ngeumshe, aged 37, from Walsall, is taking part in an international study that looks into using the new drug IMR-687 to help prevent sickle cell crises with no side effects.

Currently, many patients take Hydroxycarbamide, and can experience a number of side effects, including discolouring of the nails and neutropenia which means they are more vulnerable to infections.

Liz Green, Sickle Cell and Thalassemia (SCAT) Manager said: “This is the first time that we have taken part in a research project and we are extremely proud to have become the first centre to recruit to this worldwide study.

“We held an engagement event to speak to our patients about the trial and the feedback from this was very positive with around 40 people attending.

“Our first recruit came forward in January, with Marie-Claire coming forward soon afterwards. We are one of only four centres involved in the UK, and the only outside of London.

“Research trials into sickle cell are quite uncommon, so its fantastic news for our patients that research is now being done into this condition which is looking at alternative treatment.”

Marie-Claire, who was born with the condition but diagnosed when she was aged 10, said: “I’m extremely proud to be the second person in the world to take part in this research and I would encourage more people to be involved in clinical trials as they make such a difference.

“Sickle cell is a chronic condition which affects your day-to-day life. I feel tired most of the time and having a social life can sometimes be challenging.

“Over the years there have been various treatments for patients like me, but nothing really works effectively. That’s why when the sickle cell team at City Hospital asked me if I would like to take part in this study; I didn’t hesitate in saying yes. Fortunately, I met the criteria and was able to start it this year.”

Marie-Claire added: “My condition affects many different aspects of my life and sometimes even the people you live with. My husband Cly Kofi is my strength and support from the moment we met.

“One of the most difficult decisions we had to make was whether we should have a baby. We decided to go ahead and I was closely monitored at City Hospital throughout. I was able to deliver my baby safely even though I had several health complications following his birth. My son, Jayson, is nearly two years old now and brings so much joy to my life.”

Marie-Clare has always been a strong advocator for clinical trials and providing support to patients who have similar conditions like her. She explained: “Sickle cell is a very common condition among the Black and Asian communities. The condition itself prevents the body from producing enough oxygen for the red blood cells and people can develop crises, which can sometimes be life threatening.”

How the trial will work:

  • The trial is split into two groups.
  • Group A will be made up of patients who do not take Hydroxycarbamide.
  • Half will be given the new drug to take whilst the others will take a dummy medication, known as a placebo.
  • Group B will involve patients who take Hydroxycarbamide.
  • Again half will be given the new drug which they will take alongside Hydroxycarbamide. The other half will take a placebo.
  • The aim will be to find out how safe the study drug is for treating patients and whether it has any unwanted effects.
  • It will also look at how long it takes IMR-687 to get into the patient’s bloodstream, the length of time it stays there and how it is broken down and processed by the body.
  • They will be monitored on a regular basis to check any adverse reactions they may have. Both SWBH patients are included in this group.