Research and Clinical Trials

Please see our individual condition pages or our news section for up to date information on research and clinical trials.

We endeavour to keep our website as up to date as possible but please be aware that the information is correct at the time of publication. It may be that there has been an update for a particular clinical trial or research study since, so please take this into consideration.

If you are aware of a research paper or clinical trial for a leukodystrophy we have not featured or you have any questions, then please contact us.

Alex - The Leukodystrophy Charity

Research Summaries

We produce monthly research summaries which contains recent leukodystrophy research and clinical trials. The summary includes article summaries and direct links to websites and articles.

Click on the links to access each individual research summary:

September 2023

August 2023

July 2023

June 2023

May 2023

April 2023

March 2023

February 2023

January 2023

December 2022

November 2022

October 2022

September 2022

August 2022

July 2022

June 2022

May 2022

April 2022

March 2022

February 2022

January 2022

December 2021

November 2021

October 2021

September 2021

August 2021

July 2021

December 2020 – March 2021


Please be aware these summaries are produced voluntarily by Biomedical Science students and are their interpretations of the information and findings. This information is reviewed by our Research Analyst Kristina Backlund MMSc. Alex TLC assumes no responsibility or liability for any errors or omissions in the content of these summaries. The information contained in the research summaries is provided on an “as is” basis with no guarantees of completeness, accuracy, usefulness, or timeliness.

If you are unsure of any of the details within the summaries, please refer to the actual articles or contact


Alex - The Leukodystrophy Charity


LEUKOLABS are a key partner of Alex TLC. They are a UK founded network to promote collaboration in leukodystrophy research by bringing together researchers and clinicians to promote translational leukodystrophy research with patient-focused outcomes.


To unite researchers and clinicians working on leukodystrophies, promote collaborative projects and develop therapies.

Mission Statements

  1. Build a national and international community through partnership with leukodystrophy stakeholders: national health services, patient networks, research communities and industry sector.
  2. Boost leukodystrophy research by developing mechanisms to coordinate and prioritise next steps in research undertakings and attract funding.
  3. Promote translational leukodystrophy research with patient-focused outcomes.

To find out more about their work, visit: LEUKOLABS website

Alex - The Leukodystrophy Charity

EUPATI Toolbox

We understand that research is a high priority for patients and families affected by leukodystrophy, but often the processes and language used can be inaccessible for those without a scientific background. If you would like to know more about research development, clinical trials and licencing, EUPATI (The European Patients’ Academy) have developed a really useful toolkit, available in a variety of different languages.  EUPATI focuses on education and training to increase patients’ ability to understand and contribute to medicines research and development, and improve the availability of objective, reliable, patient-friendly information for the public.

To access the resource, please follow the link: EUPATI Toolbox

Alex - The Leukodystrophy Charity