Our Research Projects
One of the objectives of the Thalidomide Trust is to fund research that can help improve the lives of thalidomide survivors.
The projects that have been conducted cover many different aspects of health, wellbeing and issues that affect the daily lives of those affected by thalidomide.
Pilot study to evaluate the presence of paraesthesia (pins and needles), numbness and pain (peripheral neuropathy) in adults with thalidomide embryopathy.
Health, Wellbeing and Quality of Life Research
Poor Balance, Bilateral Upper Limb Phocomelia, No Previous Exercise: A Challenging Combination For Fall Prevention in A Middle-aged Thalidomide Survivor
Run a pilot focussed support programme for a middle-aged thalidomide survivor with bilateral radial club hands and increasing balance issues who had never previously exercised. This aimed to show the health and wellbeing benefits that could be achieved by the patient through physiotherapy and exercise.
Research to find out what problems beneficiaries are experiencing with falls and balance, particularly as they are aging.
Establishing the type and extent of bladder and bowel issues that beneficiaries are having. This study was undertaken as a direct result of the 2015 Health & Wellbeing survey where these issues were raised.
Investigating beneficiary experiences of healthcare services to identify concerns and gather ideas to improve care for thalidomide survivors.
Exploration of lessons to be learnt from the history and use of the drug thalidomide, and how this knowledge can benefit thalidomide survivors today.
2015 survey into the health and wellbeing of beneficiaries, any problems they face and concerns for their future. 75% of beneficiaries took part therefore giving an accurate picture of their situations.
Research to gather information on health-related quality of life and employment situations of UK thalidomide survivors. An indication of how their Health Grants are spent was also collected.
A 3 year study to evaluate the impact of the Health Grant on the health and wellbeing of individual thalidomide survivors for current and potential future needs.
The first stage of the wider Low Mood Improvement for Thalidomide Survivors study. The aim of they survey is to provide a picture of the extent and severity of depressions and anxiety of UK thalidomide survivors. From this information a forward plan will be developed to tackle issues found.
Following the Mood Survey a pilot scheme was undertaken to provide support to thalidomide survivors with low mood.
A review to bring together as much evidence as possible on thalidomide-related issues that thalidomide survivors are experiencing as they get older.
Cost of Living With Thalidomide Research
A review of the costs associated with daily living and future health needs of the UK thalidomide-affected people. 80 people took part in the study. The findings were compared to funding available to identify gaps.
Report of challenges faced by beneficiaries in maintaining paid work and careers as health problems increase, and of the consequential loss of earnings and pension entitlements.