Research underpins everything we do. Gathering information and feedback from beneficiaries helps to guide our plans for supporting you in the future.
Your participation in our surveys can help us to develop medical research, identify new treatment pathways, attract funding, and influence policy change in healthcare organisations.
We are always eager to learn what we’re doing well and what additional support you would like from Alex TLC.
Discover more and play your part!
Annual impact survey
Our annual survey goes out to all our service users. It’s a chance for us to understand the specific needs of the leukodystrophy community and how our beneficiaries feel about the services we provide. Your responses help us to identify opportunities and assess the future needs of the people we support.
With the help of your honest feedback, we can make improvements to our services. Past surveys have led to an increase in home visits and additional peer support to help families cope. We have also gathered important data on how patients’ needs change as they progress to adulthood.
Our annual survey opens in autumn. Please look out for your invitation.
Take a look at the results of our 2018 impact survey.
Community Weekend evaluation
Everyone who attends our biennial Community Weekend event receives an evaluation survey to feed back on the success of the event. Your responses are vital. They enable us to gather valuable data and evidence to support future funding applications and influence NHS treatment policy.
Learn more about our Community Weekend.
Read the findings from our 2018 event.
“The weekend is a great event as it brings together families and professionals from all over the world to share information and support; peer support gained at the event is invaluable.”
Occasionally we may share surveys on behalf of affiliated or partner organisations to support their research. Partner survey opportunities are listed below.
University of Exeter – ICoN:
The ICoN study aims to find out how NHS staff assess and treat children with special educational needs and disability to help them become continent. Research to evaluate the ways to improve continence for children with special educational needs and disability was in the top 10 research priorities as voted for by families and clinicians. It is really exciting that we have the opportunity to be addressing this often neglected topic in research that is central to the daily lives of children and families.
Are you a young person aged up to 25 with special educational needs and/or a disability?
Are you a parent or carer of a child or young person aged up to 25 with special educational needs and/or a disability?
Do you have experience of working with children and young people with special educational needs and disability, and/or toileting difficulties?
United Leukodystrophy Foundation:
Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN). Symptoms result from a combination of involvement of the spinal cord (myelopathy) and nerves (peripheral neuropathy) as well as the endocrine system (adrenal insufficiency). Although the literature suggests that men are affected earlier and more severely than women, the natural history of specific symptoms, from the perspective of the individual with AMN, and the effectiveness of their treatment has not been well described.
Specific Aims of this Study
1. To delineate in detail the natural history of symptoms of AMN in men and women
2. To explore the psychological, social and quality of life implications of impairment related to symptoms of AMN
3. To apply the knowledge gained from this study to improving clinical protocols and multidisciplinary care for men and women with AMN
All responses are anonymous and investigators will not be able to separate your answers from those of other individuals with AMN completing the survey. The survey should take approximately 10-15 minutes to complete.
Who can take this survey?
Genetic Alliance welcome responses from anyone who has Alexander disease, anyone whose family member has the condition or anyone who has caring responsibilities for someone with Alexander disease. Genetic Alliance welcome responses from patient organisations and support groups who represent those with the condition.
What is this survey about?
Genetic Alliance are looking to gather patient views on how their condition affects them, as well as the views of their family members and carers. They are looking to understand the impact that the different symptoms can have on a person’s day to day life. It is essential therefore, that they gain an understanding of the condition from those who really understand it – you.
From this survey they will present an accurate picture of the effects of this condition on patients to the HFEA as they make a decision on whether the condition is ‘sufficiently serious’ enough to licence for PGD.
We welcome your feedback on our services at any time. Please get in touch to help us to be the best possible support to people and families with leukodystrophies.