RecruitingNot Applicable

Phenotypic and Etiological Characterization of Susac Syndrome

France180 participantsStarted 2025-07-01

Plain-language summary

SUSAC's Syndrome (SS) is characterized by the clinical triad of encephalopathy, hearing loss, and retinal artery branch occlusions. Since the first description of SS in 1979, hundreds of patients with SS, mostly young women, have been reported. However, comprehensive epidemiological, clinical and etiological features of SS have never been specifically addressed so far.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Patient over 18 years of age * Patient presenting with at least two of the signs of the clinical triad: encephalopathy, cochlear damage authenticated by an audiogram (uni- or bilateral, predominantly in the middle or low frequencies), retinal artery occlusion assessed by fundoscopy or fluorescein retinal angiography. Exclusion Criteria: * Patient having been individually informed and objecting to the use of his/her data * Patient under legal protection (guardianship or curatorship) * Differential diagnosis established: multiple sclerosis, mitochondriopathy, CADASIL, primary tumour of the central nervous system, Lyme disease.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

To characterize the epidemiological Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

2. To characterize the etiological of Susac's Syndrome

Timeframe: 10 years

2. To characterize the etiological of Susac's Syndrome

Timeframe: 10 years

Trial details

NCT IDNCT06881368

SponsorAssistance Publique - Hôpitaux de Paris

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2044-11-30

Contact for this trial

Karim Sacre, MD, PHD

+33140258705 karim.sacre@aphp.fr

View on ClinicalTrials.gov More Susac Syndrome trials

Plain-language summary

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

To characterize the epidemiological Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

1. To characterize the epidemiological of Susac's Syndrome

Timeframe: 10 years

2. To characterize the etiological of Susac's Syndrome

Timeframe: 10 years

2. To characterize the etiological of Susac's Syndrome

Timeframe: 10 years