New study to develop safer prenatal testing for sickle cell disease
by Mr Eugene Oteng-Ntim, Consultant Obstetrician and Dr Kathy Mann, Principal Clinical Scientist
A project to develop a safer, non-invasive prenatal test for sickle cell disease has been launched by Guy’s and St Thomas’ Foundation Hospital Trust in collaboration with Viapath Analytics. The SCIP project, which stands for Sickle Cell non-Invasive Prenatal diagnosis, aims to replace current prenatal tests (amniocentesis and chorionic villus sampling, which have a small risk of miscarriage) with a simple test that requires only a maternal blood sample. The baby’s genes in the maternal blood sample will be tested to determine if the baby would be affected or unaffected by sickle disease or have the sickle trait. Blood samples from pregnant women who are carriers or affected by sickle cell disease are needed to help develop the test.
Information about the SCIP project will be available at antenatal appointments at Wooden Spoon House and St Thomas’ Hospital Fetal Medicine Unit; additional information can be obtained by telephone (0207 188 6874) or by email (Eugene.Oteng-Ntim@gstt.nhs.uk). The SCIP project will run for 18 months and is funded by the Guy’s and St Thomas’ Charity. We look forward to updating you in subsequent issues.
GBT 440-031 Study
by Dr Jo Howard, GSTT
The Sickle Cell Teams at Guys’ and St Thomas’ and King’s College London are delighted to be participating in the GBT 440-031 study. This study opened in July 2017 in the UK and is an international multicentre study recruiting over 400 patients with sickle cell disease (SCD) from all around the world.
The GBT 440-031 trial is investigating whether a new medication (GBT 440-031) is safe and effective in reducing anaemia, pain crises, fatigue and other day-to-day symptoms in adolescents and adults with SCD. The medication is taken by mouth every day and is designed to keep the haemoglobin molecules in red blood cells from sticking to each other. This may help the red blood cells keep their normal shape and stop sickling. Early trials have shown that the medication is safe and that it may improve anaemia.
You can participate in this trial if you are between 12 and 65 years of age with SCD. You must have had at least one pain crisis in the past year. The study doctor and staff can explain other requirements for participation. If you enter the trial you will be randomly allocated treatment with the trial medication or a placebo (a ‘sugar-pill’). You will be in the trial for between 2.5 months and 1.5 years, depending when you start.
If you would like to find out more about the trial and if you are eligible to join please talk to your sickle doctor or nurses. You can find more information here.