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.

Clinical Research

 

virusPeripheral Nerve Dysfunction In Middle-Aged Subjects Born With Thalidomide Embryopathy

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

 

illustration of a questionnaire or survey with lines of text and tick boxes on a lap top screenUpper Limb Study

As the majority of our beneficiaries are upper limb affected, we wanted to study what the long-term effects were of having an upper limb difference and to compare the effects of those who have had surgery versus those who have not.


a portrait of an older man in a black topAge-related Changes in Patients With Upper Limb Thalidomide Embryopathy in the United Kingdom

Reporting the long-term upper limb disability in patients with upper limb thalidomide embryopathy in the UK. Also investigating the health-related quality of life in a number of different areas.


Physical Activity Promotion In The Thalidomide Population

Developing an understanding of thalidomide survivors’ experiences of physical activity and to use this understanding to promote an increase in physical activity motivation and behaviour.


physiotherapist Fraser treating David in his upper back to reduce his painPoor 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.


balancing personFalls And Balance

Research to find out what problems beneficiaries are experiencing with falls and balance, particularly as they are aging.


person needing toiletBladder And Bowel

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.


older man talking to a doctorHealthcare Services – Access, Quality And Improving The Care Pathway For Thalidomide Survivors

Investigating beneficiary experiences of healthcare services to identify concerns and gather ideas to improve care for thalidomide survivors.


Thalidomide word in blocksThe Legacy Of Thalidomide

Exploration of lessons to be learnt from the history and use of the drug thalidomide, and how this knowledge can benefit thalidomide survivors today.


older lady smiling happilyHealth And Wellbeing

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.


medical professionalHealth, Quality Of Life And Employment Among Thalidomide-affected People

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.


annual grantEvaluation Of The Health Grant To Thalidomide-Impaired People

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.


mental health - low mood surveyLow Mood Improvements For Thalidomide Survivors – Mood Survey

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.


mental health - low mood surveyLow Mood Improvements For Thalidomide Survivors – Final Report

Following the Mood Survey a pilot scheme was undertaken to provide support to thalidomide survivors with low mood.


beneficiaries at a thalidomide trust fit for the future event focusing on keeping activeThe Changing Health Of Thalidomide Survivors As They Age: A Scoping Review

A review to bring together as much evidence as possible on thalidomide-related issues that thalidomide survivors are experiencing as they get older.


depressed man with head in handsDepression And Anxiety Symptoms In UK Thalidomide Survivors

A study to gather information about the pattern of symptoms of depression and anxiety amongst UK thalidomide survivors.


Cost of Living With Thalidomide Research

 

grant advanceSecuring Our Future: The Disability And Health Costs Of UK Thalidomide-affected People

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.


Pensions retirememnt word cloudLoss Of Earnings And Pensions Among UK Thalidomide Survivors

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.