A study for people living with Alexander disease
If you have Alexander disease and have been treated — or will be treated — with zilganersen, you may be able to take part. The study collects surveys and de-identified medical record information. Everything is done from home.
See if you're eligible
Common questions
An observational study sponsored by Ionis for people living with Alexander disease who are being treated with zilganersen. Observational means it follows how people are doing over time through surveys and medical record information — it does not provide treatment or change care.
The study takes place across the United States and is expected to enroll up to 80 participants.
Taking part is completely voluntary. Choosing not to join, or deciding later to stop, will not affect medical care or access to zilganersen in any way.
Review and sign an electronic consent, allow Citizen Health to gather relevant medical record information, and complete a set of surveys at four points over two years: at the start, at six months, at one year, and at two years. Each set is expected to take up to about 35 minutes.
The first set of surveys should be completed within 42 days of starting.
No. The study does not replace or change care and does not add any in-person visits. Everything is done electronically from home.
Gift cards are emailed by Citizen Health to the person who completes the surveys. If someone stops early, they are compensated for enrollment and for the survey timepoints properly completed.
A $30 digital gift card once you have consented and authorized Citizen Health to collect medical records, and a $70 digital gift card for each completed survey timepoint — up to four. That is up to $310 in total.
Yes. For participants under 18, a parent, legal guardian, or legally authorized representative may consent on their behalf, and a caregiver may complete surveys where permitted. An adult who cannot respond on their own may have an authorized caregiver respond for them. The same person should complete the surveys throughout the study.
Studies like this one have specific requirements, and not everyone will be a match. You're still welcome to join Citizen Health, free, to gather your medical records in one place.
Yes. You can withdraw at any time without penalty and without affecting care. If you withdraw, Citizen Health stops collecting survey data and stops sharing records for the study.
Your data
Citizen Health securely collects and stores your information and is the main keeper of your data. When study information is shared with Ionis, it is coded with a participant ID and direct identifiers such as name and address are removed first. Only Citizen Health holds the code.
Strong protections are in place, though no system can promise confidentiality is absolutely guaranteed. The consent form has the full details.
With your authorization, Citizen Health gathers records from the places care has been received and stores them on an encrypted, access-controlled platform, in line with federal and state privacy laws. Your records on the platform belong to you and are not shared with third parties without your consent.
A free, patient-controlled platform that lets you gather your medical records in one place and complete the study surveys. Citizen Health is the registry data custodian and survey administrator for this study, and you can use the platform whether or not you join the study.
That is an important question for the treating clinician, since they manage care and our team cannot give medical advice. If you would like to tell us about a side effect so the study team is aware, call 855-244-8493 or email research@citizenhealth.com. For anything urgent, seek medical care or call 911.
