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The project will be conducted in four distinct stages. Firstly, evidence synthesis will be carried out to gather and analyze available data on the topic. Following this, a discussion among physicians will be facilitated to understand the knowledge gaps among rheumatologists and other specialists regarding SLE. Subsequently, consensus will be sought among a select group of rheumatologists on various aspects related to patient care, unmet medical needs, and implementation of new technologies. Finally, the findings and conclusions from these stages will be used to inform the development and publication of scientific papers.
This study has as geral objective understanding the currently unmet development needs of rheumatologists and other specialists involved in the care of patients with SLE, from a comparative perspective with other rheumatic diseases. The goal is to increase the engagement of these professionals in the discussion and management of patients and sécific objectives, compare the currently available evidence on SLE and three other rheumatic diseases (rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis); Promote discussions to understand the knowledge development needs of rheumatologists regarding SLE; Generate a consensus on the equity of rheumatic diseases in relation to public policies, guidelines, registries, patient association mobilization, patient journey, time to diagnosis, and available medications with access to treatment and, Promote awareness and knowledge through scientific publications about SLE.
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| Measure | Description | Time Frame |
|---|---|---|
| Understand the difficulties faced by patients with SLE and identify gaps in diagnosis and treatment | Prepare an evidence synthesis using available data, discuss the topic with medical experts to understand knowledge gaps among rheumatologists and other professionals regarding SLE, and build consensus among a group on various aspects related to patient care, unmet medical needs, and implementation of new technologies | through study completion, an average of 3 months |
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Inclusion Criteria:
- All the patients with SLE registered in DataSUS, in the outpatient system (SIA) and in the Hospital System (SIH) from 2019 to 2022
Exclusion Criteria:
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All population data identified in the literature review and desk research; analysis of the National Health Database in Brazil (DataSUS)
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Research Site | São Paulo | Brazil |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 41285502 | Derived | Monticielo OA, Seguro LPC, de Ataide Mariz H, Daher Macedo M, Therumi Assao V, Lima J, Volpi E Silva N, Dos Reis-Neto ET. Current landscape of immune-mediated inflammatory rheumatic diseases in Brazil's public and private systems: retrospective cohort study. BMJ Open. 2025 Nov 23;15(11):e104870. doi: 10.1136/bmjopen-2025-104870. |
| Label | URL |
|---|---|
| CSR Synopsis | View source |
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Qualified researchers can request access to anonymized individual patient-level data from AstraZeneca group of companies sponsored clinical trials via the request portal Vivli.org. All requests will be evaluated as per the AZ disclosure commitment: https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure.
"Yes", indicates that AZ are accepting requests for IPD, but this does not mean all requests will be approved.
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AstraZeneca will meet or exceed data availability as per the commitments made to the EFPIA/PhRMA Data-Sharing Principles. For details of our timelines, please refer to our disclosure commitment at https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure.
When a request has been approved AstraZeneca will provide access to the anonymized individual patient-level data via secure research environment Vivli.org. A Signed Data Usage Agreement (non-negotiable contract for data accessors) must be in place before accessing requested information.
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| ID | Term |
|---|---|
| D008180 | Lupus Erythematosus, Systemic |
| D001168 | Arthritis |
| D013166 | Spondylitis |
| ID | Term |
|---|---|
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
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| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D001850 | Bone Diseases, Infectious |
| D007239 | Infections |
| D001847 | Bone Diseases |
| D013122 | Spinal Diseases |