Susac SyndromeNCT06349603
Physiotherapy Approach for Susac Syndrome
An observational study of Susac Syndrome, run by Rehabilitation Centre Zivot at 1 site in Bosnia and Herzegovina.
Trial summary
Susac's syndrome is a rare autoimmune disorder characterised by a triad of encephalopathy (brain dysfunction), branch retinal artery occlusion (loss of vision) and sensorineural hearing loss. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Susac Syndrome
- How many people
- 1 participants
- Where
- 1 siteBosnia and Herzegovina
- Study dates
- 13 Feb 2023to 6 Apr 2023
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- Child, Adult, Older adult
Study population: The study population consisted of a single adolescent patient diagnosed with Susac syndrome, aged 17 years. The patient presented with motor impairments and functional limitations attributed to Susac syndrome, including difficulties in mobility and muscle weakness. No significant comorbidities were reported, and the patient was medically stable to participate in a 12-week intensive physiotherapy program. Informed consent was obtained from the participant and their legal guardian prior to enrollment in the study."
Who may be able to join
- Confirmed diagnosis of Susac syndrome.
- Willingness and ability to participate in a 12-week intensive physiotherapy program.
- Stable medical condition that allows participation in physiotherapy without significant risks.
- Ability to provide informed consent for participation in the study.
Who cannot join
- Presence of severe comorbidities or medical conditions that would interfere with participation in physiotherapy or confound the study outcomes.
- Inability to comprehend or follow the instructions for physiotherapy exercises.
- Pregnancy, as certain physiotherapy modalities may not be suitable during pregnancy.
- Any other condition or circumstance that, in the opinion of the investigator, would compromise the safety or validity of participation in the study.
Trial locations and contacts
1 site in 1 country.
Bosnia and Herzegovina1 site
Rehabilitation centre Život
Mostar, 88000
About this study
Official title: Integrated Physiotherapy Approach for Susac Syndrome: A Comprehensive Case Study
Susac's syndrome is a rare autoimmune disorder characterised by a triad of encephalopathy (brain dysfunction), branch retinal artery occlusion (loss of vision) and sensorineural hearing loss. This study presents the case of a patient undergoing intensive physiotherapy intervention following an injury, focusing on assessments such as volume and range of motion measurements, manual muscle tests, and pain intensity evaluations using various scales.
Read the detailed description
The patient, aged 17, initially presented with severe limitations in mobility, diagnosed with Susac syndrome. Requiring assistance to walk even short distances due to fear and insecurity. Through a structured physiotherapy program spanning several months, various assessments were conducted, including manual muscle tests and circumference measurements. Significant improvements were observed for muscle function, upper and lower limb circumferences, and performance in mobility tests.
- Conditions
- Susac Syndrome
- Keywords
- Physiotherapy
- Medical subject headings
- Susac Syndrome
What is being measured
The primary outcome is the main question the study is designed to answer.
Mobility and Muscle Strength Improvement
This outcome measure evaluates improvements in mobility in a single individual with Susac syndrome following 12 weeks of intensive physiotherapy. Assessments include the Timed Up and Go test (TUG), which measures the time taken for the individual to rise from a chair, walk three meters, turn around, walk back to the chair, and sit down. Progress is indicated by the transition from heavy reliance on assistance for mobility to independent walking for 100 meters.
Measured: Assessed at baseline and after 12 weeks of intensive therapy.
Muscle Strength Improvement Outcome Measure
This outcome measure evaluates improvements in muscle strength in a single individual with Susac syndrome following 12 weeks of intensive physiotherapy. Assessments include manual muscle tests (MMT) to assess the strength and function of specific muscle groups, using a standardized grading scale. Progress is indicated by higher grades in manual muscle tests, reflecting improved muscle strength and endurance.
Measured: Assessed at baseline and after 12 weeks of intensive therapy.
Pain Intensity Outcome Measure
This outcome measure evaluates changes in pain intensity experienced by the individual with Susac syndrome following 12 weeks of intensive physiotherapy. Pain intensity is assessed using the Visual Analog Scale (VAS), where the individual rates their pain on a scale from 0 to 10, with 0 indicating no pain and 10 indicating the worst possible pain. Progress is indicated by a decrease in VAS scores, reflecting reduced pain intensity.
Measured: Assessed at baseline and after 12 weeks of intensive therapy.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Apr 2024
- Study start13 Feb 2023
- Primary completion1 Apr 2023
- Study completion6 Apr 2023
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (15)Papers the sponsor has linked to this study.
- Other trials for Susac SyndromeStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Cross-sectional
- Enrolment
- 1 participants (actual)
Sponsor and investigators
- Lead sponsor
- Rehabilitation Centre Zivot
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Darko Bilic, Rehabilitation Centre Zivot
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06349603
- Sponsor's protocol ID
- S2023
- Status last verified
- Apr 2024
- First submitted
- 29 Mar 2024
- Last updated
- 5 Apr 2024
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Publications
Ahmad A, Tariq F, Zaheer M. Incomplete Susac's Syndrome: A Case Report and Literature Review. Cureus. 2022 Aug 11;14(8):e27903. doi: 10.7759/cureus.27903. eCollection 2022 Aug.
PubMed 36110471Bose S, Papathanasiou A, Karkhanis S, Appleton JP, King D, Batra R, Mollan SP, Jacob S. Susac syndrome: neurological update (clinical features, long-term observational follow-up and management of sixteen patients). J Neurol. 2023 Dec;270(12):6193-6206. doi: 10.1007/s00415-023-11891-z. Epub 2023 Aug 22.
PubMed 37608221Coulette S, Lecler A, Saragoussi E, Zuber K, Savatovsky J, Deschamps R, Gout O, Sabben C, Aboab J, Affortit A, Charbonneau F, Obadia M. Diagnosis and Prediction of Relapses in Susac Syndrome: A New Use for MR Postcontrast FLAIR Leptomeningeal Enhancement. AJNR Am J Neuroradiol. 2019 Jul;40(7):1184-1190. doi: 10.3174/ajnr.A6103. Epub 2019 Jun 27.
PubMed 31248864Cvikova M, Stefela J, Vsiansky V, Dufek M, Dolezalova I, Vinklarek J, Herzig R, Zemanova M, Cervenak V, Brichta J, Barkova V, Kouril D, Aulicky P, Filip P, Weiss V. Case report: Susac syndrome-two ends of the spectrum, single center case reports and review of the literature. Front Neurol. 2024 Feb 16;15:1339438. doi: 10.3389/fneur.2024.1339438. eCollection 2024.
PubMed 38434197David C, Sacre K, Henri-Feugeas MC, Klein I, Doan S, Cohen FA, Jouvent E, Papo T. Susac syndrome: A scoping review. Autoimmun Rev. 2022 Jun;21(6):103097. doi: 10.1016/j.autrev.2022.103097. Epub 2022 Apr 10.
PubMed 35413469Egan RA. Diagnostic Criteria and Treatment Algorithm for Susac Syndrome. J Neuroophthalmol. 2019 Mar;39(1):60-67. doi: 10.1097/WNO.0000000000000677.
PubMed 29933288Luan X, Tian X, Zhang H, Huang R, Li N, Chen P, Wang R. Exercise as a prescription for patients with various diseases. J Sport Health Sci. 2019 Sep;8(5):422-441. doi: 10.1016/j.jshs.2019.04.002. Epub 2019 Apr 18.
PubMed 31534817Masjuan M, Ivanovski T, Sarasibar Ezcurra H, Rigo Oliver E. Behavioral Impairment and Amnesia at the Onset of Susac Syndrome. Cureus. 2023 Apr 25;15(4):e38089. doi: 10.7759/cureus.38089. eCollection 2023 Apr.
PubMed 37252530Patil S, Gs V, Sarode GS, Sarode SC, Khurayzi TA, Mohamed Beshir SE, Gadbail AR, Gondivkar S. Exploring the role of immunotherapeutic drugs in autoimmune diseases: A comprehensive review. J Oral Biol Craniofac Res. 2021 Apr-Jun;11(2):291-296. doi: 10.1016/j.jobcr.2021.02.009. Epub 2021 Feb 23.
PubMed 33948430Pereira S, Vieira B, Maio T, Moreira J, Sampaio F. Susac's Syndrome: An Updated Review. Neuroophthalmology. 2020 May 1;44(6):355-360. doi: 10.1080/01658107.2020.1748062. eCollection 2020.
PubMed 33408428Reedy MB, Wang Y, Beinlich BR, Rose WN. Successful Treatment of Incomplete Susac Syndrome with Simultaneous Corticosteroids and Plasmapheresis Followed by Rituximab. Case Rep Neurol Med. 2021 Aug 12;2021:5591559. doi: 10.1155/2021/5591559. eCollection 2021.
PubMed 34567813Rennebohm RM, Asdaghi N, Srivastava S, Gertner E. Guidelines for treatment of Susac syndrome - An update. Int J Stroke. 2020 Jul;15(5):484-494. doi: 10.1177/1747493017751737. Epub 2018 Jan 10.
PubMed 29319463Sveinsson O, Kolloch J, Traisk F, Brundin L. [Susac syndrome - an unusual syndrome which can be mistaken for multiple sclerosis]. Lakartidningen. 2020 Feb 10;117:FSSS. Swedish.
PubMed 32045006Wilf-Yarkoni A, Elkayam O, Aizenstein O, Oron Y, Furer V, Zur D, Goldstein M, Barequet D, Hallevi H, Karni A, Habot-Wilner Z, Regev K. Increased incidence of Susac syndrome: a case series study. BMC Neurol. 2020 Sep 2;20(1):332. doi: 10.1186/s12883-020-01892-0.
PubMed 32878610Bilic D, Hrkac A, Keskic F. Integrated physiotherapy approach for susac syndrome: A comprehensive case study. J Bodyw Mov Ther. 2024 Oct;40:757-760. doi: 10.1016/j.jbmt.2024.06.003. Epub 2024 Jun 4.
PubMed 39593673
Study at a glance
From the registry record, last updated by the sponsor on 5 Apr 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Integrated Physiotherapy Approach for Susac Syndrome: A Comprehensive Case Study
- ClinicalTrials.gov ID
- NCT06349603
- Acronym / sponsor ID
- S2023
- Conditions
- Susac Syndrome
- Keywords
- Physiotherapy
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 1 participants (actual)
- Lead sponsor
- Rehabilitation Centre ZivotUniversity, hospital or other
- Study start
- 13 Feb 2023 (actual)
- Primary completion
- 1 Apr 2023 (actual)
- Study completion
- 6 Apr 2023 (actual)
- First posted
- 5 Apr 2024 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Susac's syndrome is a rare autoimmune disorder characterised by a triad of encephalopathy (brain dysfunction), branch retinal artery occlusion (loss of vision) and sensorineural hearing loss. This study presents the case of a patient undergoing intensive physiotherapy intervention following an injury, focusing on assessments such as volume and range of motion measurements, manual muscle tests, and pain intensity evaluations using various scales.
Detailed description
The patient, aged 17, initially presented with severe limitations in mobility, diagnosed with Susac syndrome. Requiring assistance to walk even short distances due to fear and insecurity. Through a structured physiotherapy program spanning several months, various assessments were conducted, including manual muscle tests and circumference measurements. Significant improvements were observed for muscle function, upper and lower limb circumferences, and performance in mobility tests.
Study design
- Observational model
- Case only
- Time perspective
- Cross-sectional
Who may qualify
- Sex
- All
- Age groups
- Child, Adult, Older adult
- Study population
- The study population consisted of a single adolescent patient diagnosed with Susac syndrome, aged 17 years. The patient presented with motor impairments and functional limitations attributed to Susac syndrome, including difficulties in mobility and muscle weakness. No significant comorbidities were reported, and the patient was medically stable to participate in a 12-week intensive physiotherapy program. Informed consent was obtained from the participant and their legal guardian prior to enrollment in the study."
Key inclusion criteria (4 listed)
- Confirmed diagnosis of Susac syndrome.
- Willingness and ability to participate in a 12-week intensive physiotherapy program.
- Stable medical condition that allows participation in physiotherapy without significant risks.
- Ability to provide informed consent for participation in the study.
Key exclusion criteria (4 listed)
- Presence of severe comorbidities or medical conditions that would interfere with participation in physiotherapy or confound the study outcomes.
- Inability to comprehend or follow the instructions for physiotherapy exercises.
- Pregnancy, as certain physiotherapy modalities may not be suitable during pregnancy.
- Any other condition or circumstance that, in the opinion of the investigator, would compromise the safety or validity of participation in the study.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Mobility and Muscle Strength Improvement
Time frame: Assessed at baseline and after 12 weeks of intensive therapy.
This outcome measure evaluates improvements in mobility in a single individual with Susac syndrome following 12 weeks of intensive physiotherapy. Assessments include the Timed Up and Go test (TUG), which measures the time taken for the individual to rise from a chair, walk three meters, turn around, walk back to the chair, and sit down. Progress is indicated by the transition from heavy reliance on assistance for mobility to independent walking for 100 meters.
Muscle Strength Improvement Outcome Measure
Time frame: Assessed at baseline and after 12 weeks of intensive therapy.
This outcome measure evaluates improvements in muscle strength in a single individual with Susac syndrome following 12 weeks of intensive physiotherapy. Assessments include manual muscle tests (MMT) to assess the strength and function of specific muscle groups, using a standardized grading scale. Progress is indicated by higher grades in manual muscle tests, reflecting improved muscle strength and endurance.
Pain Intensity Outcome Measure
Time frame: Assessed at baseline and after 12 weeks of intensive therapy.
This outcome measure evaluates changes in pain intensity experienced by the individual with Susac syndrome following 12 weeks of intensive physiotherapy. Pain intensity is assessed using the Visual Analog Scale (VAS), where the individual rates their pain on a scale from 0 to 10, with 0 indicating no pain and 10 indicating the worst possible pain. Progress is indicated by a decrease in VAS scores, reflecting reduced pain intensity.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 5 Apr 2024.
- Background: PubMed 36110471Ahmad A, Tariq F, Zaheer M. Incomplete Susac's Syndrome: A Case Report and Literature Review. Cureus. 2022 Aug 11;14(8):e27903. doi: 10.7759/cureus.27903. eCollection 2022 Aug.
- Background: PubMed 37608221Bose S, Papathanasiou A, Karkhanis S, Appleton JP, King D, Batra R, Mollan SP, Jacob S. Susac syndrome: neurological update (clinical features, long-term observational follow-up and management of sixteen patients). J Neurol. 2023 Dec;270(12):6193-6206. doi: 10.1007/s00415-023-11891-z. Epub 2023 Aug 22.
- Background: PubMed 31248864Coulette S, Lecler A, Saragoussi E, Zuber K, Savatovsky J, Deschamps R, Gout O, Sabben C, Aboab J, Affortit A, Charbonneau F, Obadia M. Diagnosis and Prediction of Relapses in Susac Syndrome: A New Use for MR Postcontrast FLAIR Leptomeningeal Enhancement. AJNR Am J Neuroradiol. 2019 Jul;40(7):1184-1190. doi: 10.3174/ajnr.A6103. Epub 2019 Jun 27.
- Background: PubMed 38434197Cvikova M, Stefela J, Vsiansky V, Dufek M, Dolezalova I, Vinklarek J, Herzig R, Zemanova M, Cervenak V, Brichta J, Barkova V, Kouril D, Aulicky P, Filip P, Weiss V. Case report: Susac syndrome-two ends of the spectrum, single center case reports and review of the literature. Front Neurol. 2024 Feb 16;15:1339438. doi: 10.3389/fneur.2024.1339438. eCollection 2024.
- Background: PubMed 35413469David C, Sacre K, Henri-Feugeas MC, Klein I, Doan S, Cohen FA, Jouvent E, Papo T. Susac syndrome: A scoping review. Autoimmun Rev. 2022 Jun;21(6):103097. doi: 10.1016/j.autrev.2022.103097. Epub 2022 Apr 10.
- Background: PubMed 29933288Egan RA. Diagnostic Criteria and Treatment Algorithm for Susac Syndrome. J Neuroophthalmol. 2019 Mar;39(1):60-67. doi: 10.1097/WNO.0000000000000677.
- Background: PubMed 31534817Luan X, Tian X, Zhang H, Huang R, Li N, Chen P, Wang R. Exercise as a prescription for patients with various diseases. J Sport Health Sci. 2019 Sep;8(5):422-441. doi: 10.1016/j.jshs.2019.04.002. Epub 2019 Apr 18.
- Background: PubMed 37252530Masjuan M, Ivanovski T, Sarasibar Ezcurra H, Rigo Oliver E. Behavioral Impairment and Amnesia at the Onset of Susac Syndrome. Cureus. 2023 Apr 25;15(4):e38089. doi: 10.7759/cureus.38089. eCollection 2023 Apr.
- Background: PubMed 33948430Patil S, Gs V, Sarode GS, Sarode SC, Khurayzi TA, Mohamed Beshir SE, Gadbail AR, Gondivkar S. Exploring the role of immunotherapeutic drugs in autoimmune diseases: A comprehensive review. J Oral Biol Craniofac Res. 2021 Apr-Jun;11(2):291-296. doi: 10.1016/j.jobcr.2021.02.009. Epub 2021 Feb 23.
- Background: PubMed 33408428Pereira S, Vieira B, Maio T, Moreira J, Sampaio F. Susac's Syndrome: An Updated Review. Neuroophthalmology. 2020 May 1;44(6):355-360. doi: 10.1080/01658107.2020.1748062. eCollection 2020.
- Background: PubMed 34567813Reedy MB, Wang Y, Beinlich BR, Rose WN. Successful Treatment of Incomplete Susac Syndrome with Simultaneous Corticosteroids and Plasmapheresis Followed by Rituximab. Case Rep Neurol Med. 2021 Aug 12;2021:5591559. doi: 10.1155/2021/5591559. eCollection 2021.
- Background: PubMed 29319463Rennebohm RM, Asdaghi N, Srivastava S, Gertner E. Guidelines for treatment of Susac syndrome - An update. Int J Stroke. 2020 Jul;15(5):484-494. doi: 10.1177/1747493017751737. Epub 2018 Jan 10.
- Physiopedia contributors. (2022). Timed Up and Go Test (TUG). Physiopedia.Link provided by the sponsor.
- Physiopedia contributors. (2024a). Assessing Range of Motion. Physiopedia.Link provided by the sponsor.
- Physiopedia contributors. (2024b). Muscle Strength Testing. PhysiopediaLink provided by the sponsor.
- A case of possible Susac syndrome with avascular necrosis of hipLink provided by the sponsor.
- Individual participant dataSharing planned: Undecided
Related trials for Susac Syndrome
RecruitingObservational study
Phenotypic and Etiological Characterization of Susac Syndrome
Susac Syndrome
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Susac Syndrome, run by Rehabilitation Centre Zivot at 1 site in Bosnia and Herzegovina.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 5 Apr 2024. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Bosnia and Herzegovina. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Mobility and Muscle Strength Improvement (time frame: Assessed at baseline and after 12 weeks of intensive therapy.). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT06349603, which also lists 15 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 5 Apr 2024.