ALSP Registry Study

Digital registry in adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) Study

The study is being conducted so researchers can learn more about ALSP, and the effects of ALSP on patients’ lives and the lives of their caregivers. This will allow better information to be provided to ALSP patients in the future, and the information from this study may help develop new treatments for ALSP.

The study will run for approximately 24 months. If you agree to participate in the study, you will be asked to fill in some surveys about yourself and the person you care for (if you are the caregiver of someone with ALSP) via the free registry app. New surveys will be available for you to complete every 3 months, and it will take no more than 30 minutes to complete the surveys each time. You will have 2 weeks to complete the surveys at each time point. The registry has gone live in the US at the start of February and should be live in the UK the first week of March 2022.

To join the study, please complete this pre-survey at

If you are interested in getting involved or have any questions, then please either comment on the post or email


Alex - The Leukodystrophy Charity