Childhood Cerebral Adrenoleukodystrophy (CCALD) Research Study

Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD). The study is a first of it’s kind and will help to provide evidence towards Newborn screening for ALD. It is a valuable study with the results providing a good opportunity to improve the circumstances for other families. The results will directly feed into initiatives to improve diagnosis and access to treatments for ALD patients.

The study is still recruiting for participants to take part (May 2022).

Please click on the link to view the participant information sheet containing further details about the study: CCALD Study Information Sheet

If you have any questions or would like further information, please contact



Alex - The Leukodystrophy Charity