Cleveland Clinic has established a Susac Syndrome Program to provide clinical services for patients with Susac syndrome.
The Susac Syndrome Consultation Clinic
The Susac Syndrome Consultation Clinic is designed to comprehensively evaluate patients with definite or suspected Susac syndrome. This clinic is staffed by a collaborative multidisciplinary team of specialists, which is comprised of neurologists, ophthalmologists, rheumatologists, ENT specialists, audiologists, neuro-ophthalmologists, neuro-otologists, and neuro-radiologists who have developed special interest in Susac syndrome.
Patients may be referred from anywhere in the United States or internationally. Patients come to Cleveland Clinic for at least 3-4 days, during which time they attend a series of scheduled outpatient appointments with appropriate members of the team. After each member has completed their evaluation, the team draws its conclusions and shares its recommendations with the patient and the patient’s home physicians.
Susac Syndrome and MyConsult Online Second Opinion
MyConsult is an online second opinion service available to patients who would like the Susac Syndrome Program to review their medical records (and associated MRIs, fluorescein angiograms, and other studies) and offer an opinion regarding diagnosis and treatment that can be shared with the patient’s physician. An online medical second opinion for Susac syndrome costs $565.
The Susac Syndrome Program is committed to increasing awareness of Susac syndrome among physicians throughout the world. Accordingly, members of our the team are available to present information and research about Susac syndrome at medical institutions and meetings anywhere in the world.
Cleveland Clinic Main Campus
Crile Building - Desk A111
c/o Margaret LaPlaca
9500 Euclid Ave.
Cleveland, OH 44195
International Collaborative Study (ICS) of Susac Syndrome (SuS)
The International Collaborative Study (ICS) of Susac Syndrome (SuS) is designed to empower patients to share valuable information about their experience with SuS–for the sake of advancing our understanding of this disease, including its clinical course, outcome, and optimal treatment. The ICS has been fully approved by the Institutional Review Board (IRB) at Cleveland Clinic (see Complete IRB Protocol below) and is being conducted by the Susac Syndrome Program team at Cleveland Clinic. Patients from anywhere in the world may participate. We encourage as many patients as possible to participate at whatever level they wish.
The ICS consists of two separate components:
- International Disease Registry (IDR)
- Comprehensive Database Project (CDP)
To participate in the IDR, the patient does not need to sign a Patient Consent Form. To participate in the CDP, the patient must sign a Patient Consent Form.
Some patients may want to participate only in the IDR, which is an anonymous Registry that contains no patient identifying information. Patients are identified only by a code. Participation in the IDR involves only a one-time completion (by a physician) of a short form that briefly and anonymously summarizes basic information about a patient’s case of SuS.
Other patients may want to participate more fully in the ICS by joining the Comprehensive Database Project (CDP). Participation in the CDP requires written informed patient consent.The purpose of the CDP is to learn details and develop statistics about the clinical presentation, clinical course, and long-term outcome of SuS, including responsiveness of SuS to various treatments.
The CDP collects more extensive and detailed information than the IDR. It requires more time, effort, and commitment on the part of the patient depending on how extensively the patient chooses to participate. Patients will be asked to complete several data collection forms, most of which are self-report questionnaires.
For purposes of the CDP, the Susac Syndrome Program team may also request information from the patient’s medical records such as a CD of the patient’s MRI and fluorescein angiography studies and copies of selected physician notes.
If you would like to participate in the CDP or would like more information, please contact our office directly.