Digital registry in adult-onset leukoencephalopathy with
axonal spheroids and pigmented glia (ALSP)
About the survey
We are conducting a research study about adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). We aim to learn more about ALSP and how it affects people who have it, their families, and their caregivers. We hope to use the data from the study to help improve the lives of people affected by ALSP. Further details on this study are provided during study registration.
Before we launch this study, we are asking prospective participants to indicate their interest in participating in the study by completing the pre-registration survey. This survey will inform which countries we launch the study in.
Vitaccess (Vitaccess Limited, UK)
- Run this survey
- Provide the website
Vigil Neuro (Vigil Neuroscience Incorporated, US)
- Sponsor this survey
Using the website
By using the website, you are agreeing to these terms. If you disagree with any terms, do not use the website.
- only use the website if you have a confirmed diagnosis of ALSP, a confirmed diagnosis CSF1R gene mutation, or you are the family member of someone who has a diagnosis of ALSP.
- as far as you can, only enter information in the registration survey that is correct.
- not enter unlawful content in the registration survey.
Unlawful content includes:
- content that is offensive, abusive or damages someone’s reputation.
- content that breaks intellectual property rights, privacy rights, data protection rules or confidentiality rules.
- respect other website users and their rights. Do not harass or threaten them. Respect their privacy and if you can access information about them, respect its confidentiality. Do not interfere with their use of the website.
- not access, use, copy, change or share the website or its content apart from what we allow within the survey.
- not try to reverse engineer or disassemble any of the website’s technology.
- not use the website, its equipment, software, or networks unlawfully or without authorisation. This includes:
- trying to gain access without permission.
- introducing a virus or malware.
- causing any denial-of-service attack, overloading, or damage.
- committing any criminal, fraudulent or otherwise unlawful act.
- let us know as soon as possible if you learn of any misuse of the website.
- follow any extra terms we might add for the website.
Limitations to the website
- We might make changes to remove access to the website or any of its content. We can do this for any reason.
- We cannot guarantee that the website will be accurate, complete, or suitable for your needs. We do not intend for the website to give medical advice. We do not regularly check your data to spot health risks.
Our legal responsibilities
We are not legally responsible for:
- loss, damage, or distress caused by using the website.
- data or content on the website being unavailable.
- communication you take part in outside of the website. This includes communication that started using the website.
- external content you might access via the website.
Data we collect
The Oxford Science Park
Robert Robinson Avenue
+44 (0) 1865 818 983
Changes to this policy