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7 result(s) for "Hashad, Soad"
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Tocilizumab effectiveness in paediatric non-infectious uveitis: data from the International AIDA Network Registries on ocular inflammatory disorders
To describe tocilizumab (TCZ) effectiveness in 15 children with refractory non-infectious uveitis. Reported outcomes are the number of relapses before and after treatment, steroid-sparing effect and drug retention rate. Macular oedema, fluorangiographic findings and ocular complications are also reported.The mean number of ocular relapses significantly decreased from 314 per 100 eyes/year to 106 per 100 eyes/year (p=0.016). A significant steroid-sparing effect was detected (p=0.037). TCZ drug survival was 77.4% at 6 months, followed by 61.9% at 12, 24 and 36 months of follow-up. Macular oedema and retinal vasculitis resolved in all affected eyes.
Development of the paediatric society of the African league against rheumatism (PAFLAR) JIA registry and clinical profile of JIA in Africa from the PAFLAR JIA registry
Background The spectrum of Juvenile Idiopathic Arthritis (JIA) in Africa is still largely unknown. We thus set out to illustrate how we set up the PAFLAR JIA registry and describe the clinical profile of Juvenile Idiopathic Arthritis across various regions in Africa. Methods We carried out a retrospective observational cohort study where collaborators were trained on use of the existing PAFLAR REDCAP database to enter data for the JIA patients currently under their care capturing their epidemiological data, clinical features, laboratory investigations, diagnosis and therapy at initial diagnosis. Descriptive statistics including means, standard deviations, medians, interquartile ranges (IQR) for continuous variables and proportions for categorical variables were calculated as appropriate. Tests for difference between groups were performed between categorical variables using Pearson’s chi-square or Fisher’s exact tests. All analyses were performed using SPSS version 22 software. Results We enrolled 302 patients, 58.6% (177 of 302) of whom were female. The median age of disease onset was 7 years (range 3–11 years) and the median age at diagnosis was 8.5 years (range 5–12 years). The median duration delay in diagnosis was 6 months (range 1-20.8 months). The JIA categories included Systemic JIA 18.9% (57), Oligoarticular JIA 19.2% (83), Polyarticular RF + ve 5% (15), Polyarticular RF-ve 17.9% (54), Enthesitis Related Arthritis (ERA) 18.2% (55), Psoriatic Arthritis 7% (21) and undifferentiated JIA 5.6% (17). As regards treatment the commonest therapies were NSAID therapy at 31.1%, synthetic DMARDs at 18.1%, synthetic DMARDs combined with NSAIDs at 17.5% and steroid therapy at 9.6%. Biological DMARDs accounted for 2.3% of therapies offered to our patients at diagnosis. The average JADAS score was 10.3 (range 4.8–18.2) and the average CHAQ score was 1.3 (range 0.7-2.0). Conclusion Our study highlights strategies involved in setting up a Pan-African paediatric rheumatology registry that embraces our broad diversity and the vast spectrum of JIA in Africa while comparing the various therapies available to our patients. The PAFLAR JIA registry strives to ensure a comprehensive representation of the diverse healthcare landscapes within the continent. Further longitudinal observation studies are required to ascertain the long-term outcomes of our patients and ultimately help inform policy to create a more favorable health ecosystem to support the healthcare needs of JIA patients in Africa.
Imaging findings in patients with axial spondyloarthritis presenting with recurrent fever attacks: data from the international AIDA network spondyloarthritis registry
Spondyloarthritis (SpA) is a group of immuno-mediated diseases likely caused by a complex interaction between autoimmune and autoinflammatory immunological mechanisms, where a febrile clinical presentation can be an early manifestation. This retrospective study aims to assess the prevalence of inflammatory involvement of the sacroiliac joints (SIJs), pelvis, and lumbosacral spine in patients with axial-SpA and recurrent febrile presentation. MR examinations of 57 patients fulfilling the axial-SpA according to ASAS criteria and presenting with febrile symptoms were evaluated, compared to 30 patients with axial-SpA and no febrile symptoms. 20/57 patients in the axial-SpA group with recurrent fevers underwent a US examination of the SIJs. Structural damage and inflammatory alterations of the SIJs were highly prevalent in both groups. In patients with febrile syndrome, bone marrow edema (78.9%) and erosions (85.9%) were the most prevalent findings in the SIJs; SPARCC score was significantly higher in patients with typical axial-SpA onset (BME: 20.1 ± 12.28 vs. 6.15 ± 3.21; erosions: 22.16 ± 8.13 vs. 6.60 ± 3.08; p  = 0.01). Among pelvic enthesitis, enthesitis of the pubic symphysis showed a significant difference in prevalence ( p  < 0.001). Significant differences were found for the prevalence of vertebral body corner sclerosis ( p  = 0.01), zygapophyseal capsulitis ( p  = 0.005), and interspinous enthesitis ( p  = 0.006). No significant correlation was found between ultrasound findings and MR inflammatory changes ( p  > 0.05). SIJs and spinal inflammatory alterations and pelvis enthesitis were highly prevalent in axial-SpA patients with and without recurrent fever. Enthesitis of the pubic symphysis, vertebral body corner sclerosis, zygapophyseal capsulitis, and interspinous enthesitis showed a significant difference in frequency between axial-SpA patients with and without fever attacks.
Telehealth in rheumatology: the 2021 Arab League of Rheumatology Best Practice Guidelines
To develop Best Practice Guidelines (BPG) for the use of Telehealth in Rheumatology in the Arab region, to identify the main barriers and facilitators of telehealth, and to provide rheumatologists with a practical toolkit for the implementation of telehealth. Guidelines were drafted by a core steering committee from the Arab League of Associations for Rheumatology (ArLAR) after performing a literature search. A multidisciplinary task force (TF), including 18 rheumatologists, 2 patients, and 2 regulators from 15 Arab countries, assessed the BPG using 3 rounds of anonymous online voting by modified Delphi process. The statements were included in the final BPG without further voting if ≥ 80% of TF members indicated high agreement. The voting on barriers and facilitators was performed through one voting round. The toolkit was developed based on available literature and discussions during the Delphi rounds. Four General Principles and twelve Statements were formulated. A teleconsultation was specifically defined for the purpose of these guidelines. The concept of choice in telehealth was highlighted, emphasizing patient confidentiality, medical information security, rheumatologist's clinical judgment, and local jurisdictional regulations. The top barrier for telehealth was the concern about the quality of care. The toolkit emphasized technical aspects of teleconsultation and proposed a triage system. The ArLAR BPG provide rheumatologists with a series of strategies about the most reliable, productive, and rational approaches to apply telehealth.
Development of the paediatric society of the African league against rheumatism
Background The spectrum of Juvenile Idiopathic Arthritis (JIA) in Africa is still largely unknown. We thus set out to illustrate how we set up the PAFLAR JIA registry and describe the clinical profile of Juvenile Idiopathic Arthritis across various regions in Africa. Methods We carried out a retrospective observational cohort study where collaborators were trained on use of the existing PAFLAR REDCAP database to enter data for the JIA patients currently under their care capturing their epidemiological data, clinical features, laboratory investigations, diagnosis and therapy at initial diagnosis. Descriptive statistics including means, standard deviations, medians, interquartile ranges (IQR) for continuous variables and proportions for categorical variables were calculated as appropriate. Tests for difference between groups were performed between categorical variables using Pearson's chi-square or Fisher's exact tests. All analyses were performed using SPSS version 22 software. Results We enrolled 302 patients, 58.6% (177 of 302) of whom were female. The median age of disease onset was 7 years (range 3-11 years) and the median age at diagnosis was 8.5 years (range 5-12 years). The median duration delay in diagnosis was 6 months (range 1-20.8 months). The JIA categories included Systemic JIA 18.9% (57), Oligoarticular JIA 19.2% (83), Polyarticular RF + ve 5% (15), Polyarticular RF-ve 17.9% (54), Enthesitis Related Arthritis (ERA) 18.2% (55), Psoriatic Arthritis 7% (21) and undifferentiated JIA 5.6% (17). As regards treatment the commonest therapies were NSAID therapy at 31.1%, synthetic DMARDs at 18.1%, synthetic DMARDs combined with NSAIDs at 17.5% and steroid therapy at 9.6%. Biological DMARDs accounted for 2.3% of therapies offered to our patients at diagnosis. The average JADAS score was 10.3 (range 4.8-18.2) and the average CHAQ score was 1.3 (range 0.7-2.0). Conclusion Our study highlights strategies involved in setting up a Pan-African paediatric rheumatology registry that embraces our broad diversity and the vast spectrum of JIA in Africa while comparing the various therapies available to our patients. The PAFLAR JIA registry strives to ensure a comprehensive representation of the diverse healthcare landscapes within the continent. Further longitudinal observation studies are required to ascertain the long-term outcomes of our patients and ultimately help inform policy to create a more favorable health ecosystem to support the healthcare needs of JIA patients in Africa. Keywords: Juvenile idiopathic arthritis, Paediatric rheumatology, Africa, Global Health
The Libyan Arabic version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Libyan Arabic language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic, clinical data, and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, test–retest reliability, and construct validity (convergent and discriminant validity). A total of 100 JIA patients (22.0% systemic, 26.0% oligoarticular, 25.0% RF negative polyarthritis, and 27.0% other categories) and 100 healthy children, were enrolled in a paediatric rheumatology centre. The JAMAR components discriminated well healthy subjects from JIA patients. Notably, there is no significant difference between the healthy subjects and their affected peers in the school-related problems variable. All JAMAR components revealed satisfactory psychometric performances. In conclusion, the Libyan Arabic version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and clinical research.
Development and implementation of the international AIDA network spondylarthritis registry
During the last decade, spondyloarthritis (SpA) has increasingly been considered a disease at the crossroads between autoimmunity and autoinflammation. Some patients may even present with autoinflammatory-related manifestations, including fever, hidradenitis suppurativa, other neutrophilic dermatoses, and an unusually high increase in inflammatory markers. Therefore, a subgroup of SpA patients may be identified, and specific details about this cluster need to be investigated. In this regard, the AutoInflammatory Disease Alliance (AIDA) Network has developed a registry primarily aimed at better understanding the autoinflammatory aspects of SpA. The development of this Registry favors the systematic assessment of SpA through the lens of autoinflammation, giving a voice to patients with atypical presentations, and favoring a personalized treatment approach. By supporting research and facilitating the transfer of new evidence to clinical practice, this specific registry has the potential to significantly advance the field of rheumatology and enhance the lives of patients suffering from this complex and multifaceted disease.