Phenotypic and Etiological Characterization of Susac Syndrome
Launched by ASSISTANCE PUBLIQUE - HÔPITAUX DE PARIS · Mar 11, 2025
Trial Information
Current as of June 23, 2025
Not yet recruiting
Keywords
ClinConnect Summary
This clinical trial is focused on understanding Susac Syndrome (SS), a rare condition that affects the brain, hearing, and eyes. Patients with SS often experience three main symptoms: problems with thinking or memory (called encephalopathy), hearing loss, and blockages in the small blood vessels in the eye. Although many cases have been reported since it was first identified in 1979, researchers have not fully explored all the details about how common the condition is, who it affects, and what causes it.
To participate in this study, individuals must be at least 18 years old and show at least two of the three symptoms mentioned. Unfortunately, people with certain other conditions like multiple sclerosis or Lyme disease won’t be eligible. While the trial is not yet recruiting participants, those who join can expect to contribute valuable information that may help improve understanding and treatment of Susac Syndrome in the future.
Gender
ALL
Eligibility criteria
- 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.
About Assistance Publique Hôpitaux De Paris
Assistance Publique - Hôpitaux de Paris (AP-HP) is a leading public hospital system in France, renowned for its commitment to healthcare excellence and innovative medical research. As a prominent clinical trial sponsor, AP-HP plays a pivotal role in advancing medical knowledge and improving patient care through rigorous scientific investigations across a wide range of therapeutic areas. With a focus on collaboration and interdisciplinary approaches, AP-HP leverages its extensive network of hospitals and expert clinicians to facilitate high-quality clinical trials that adhere to the highest ethical and regulatory standards, ultimately aiming to translate research findings into tangible health benefits for diverse patient populations.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Paris, , France
Patients applied
Trial Officials
Karim Sacre, MD, PHD
Principal Investigator
Assistance Publique Hopitaux de Paris (APHP
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported