Neuromyelitis optica spectrum disorders in Arabian Gulf (NMOAG); establishment and initial characterization of a patient registry

2020 ◽  
Vol 38 ◽  
pp. 101448 ◽  
Author(s):  
Eslam Shosha ◽  
Abdulla Al Asmi ◽  
Eman Nasim ◽  
Jihad Inshasi ◽  
Fatima Abdulla ◽  
...  
2020 ◽  
Vol 6 (1) ◽  
pp. 205521731985019
Author(s):  
Raed Alroughani ◽  
Najeeb Qadi ◽  
Jihad Inshasi ◽  
Eslam Shosha

Neuromyelitis optica spectrum disorders (NMOSD) have been studied in different ethnic groups, including Asians, African-Americans, and Caucasians. Demonstrating the clinical features among diverse communities is important to understand the variable disease phenotypes, which will lead to further classification and better clinical management. Testing for antibody against aquaporin-4 (AQP4), the most common target antigen in NMOSD, is not available in many countries and tests use different methods, with variable sensitivity. With negative antibody results, the diagnosis of NMOSD becomes challenging and may affect the outcomes of patients with NMOSD. There are no adequate studies that assess NMOSD cohorts in the Arabian Gulf region, despite the increasing number of diagnosed cases. It is worth assessing NMOSD cohorts in the Arabian Gulf population to study the natural history of disease and to establish an epidemiological background for future perspectives. Various challenges to implement such a mission are outlined, including disease rarity, overlapping presenting symptoms and signs, which posed the issue of mimickers in the differential diagnosis, lack of specialized clinics, absence of highly sensitive testing methods for diagnosis, and the indefinite agreement on the negative AQP4 NMOSD criteria. Collaborative efforts started to take a place among many experts in the region to establish a registry of NMOSD patients for better perception of the disease pattern.


2016 ◽  
Vol 13 (1) ◽  
Author(s):  
Friederike Tuller ◽  
Hannah Holzer ◽  
Kathrin Schanda ◽  
Fahmy Aboulenein-Djamshidian ◽  
Romana Höftberger ◽  
...  

2020 ◽  
Vol 8 (F) ◽  
pp. 40-46
Author(s):  
Ivan Barbov ◽  
Nikolina Tanovska ◽  
Igor Kuzmanovski ◽  
Tatjana Boshkova-Petkovska ◽  
Aleksandar Smokovski

BACKGROUND: Neuromyelitis optica spectrum disorders (NMOSD) are rare, progressive inflammatory disorders of the central nervous system characterized by severe, immune-mediated demyelination targeting optic nerves and spinal cord. Prior establishment of diagnostic criteria, patients were often misdiagnosed which led to delayed/inappropriate treatment and disability. Current practice involving immunotherapies is insufficient. Recent data are encouraging since the novel treatments allow effective prevention. AIM: The primary objective was to evaluate the current situation to identify challenges and develop intervention that might improve the current state as secondary objectives. METHODS: Standard questionnaire containing 22 questions was developed. Collected data were analyzed and descriptive report was created. RESULTS: Current estimated prevalence is approximately 20 NMOSD patients; trend is unknown due unavailability of patient registry. Six neurologists from one health-care institution are responsible for the whole management. Despite physician’s insufficient experience, ~80% of them are willing to switch patients into innovative treatments once available. Aquaporin-4-IgG testing is not routinely available resulting in ~30% testing rate. Approximately 80–90% of patients are on maintenance treatment with immunosuppressant, corticosteroids are used for acute relapse. Lack of novel innovative medications is evident. CONCLUSION: Current NMOSD management is challenging with significant unmet needs. Highest priorities that might provide improvement are: APQ4-IgG testing availability, establishment of patient registry, and availability of novel treatments.


2018 ◽  
Author(s):  
Christian Lechner ◽  
Matthias Baumann ◽  
Eva-Maria Hennes ◽  
Kathrin Schanda ◽  
Markus Reindl ◽  
...  

2015 ◽  
Vol 262 (8) ◽  
pp. 1890-1898 ◽  
Author(s):  
Lin-Jie Zhang ◽  
Ning Zhao ◽  
Ying Fu ◽  
Da-Qi Zhang ◽  
Jing Wang ◽  
...  

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