Rare Disease Healthcare Pathway | e-Lupus | Lupus | e-cohort
The Alsinova patient platform is a digital tool already used in therapeutic areas very similar to SLE (Systemic Lupus Erythematosus) and rheumatoid arthritis, offering strong security guarantees and low adaptation costs. The availability of this tool to collect health-related quality of life data via a website and a mobile app tailored for patients with SLE should:
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Facilitate the collection of quality of life data by patients as part of their routine follow-up (patient accessibility).
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Minimize the impact of patients’ clinical profiles on the frequency of quality of life data collection.
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Enable a larger number of internists to systematically use quality of life data in consultations (or prior to consultations) (doctor accessibility).
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Measure the acceptability and persistence of usage, from both the patient and doctor perspective, of an e-health tool dedicated to lupus, involving 530 patients with Systemic Lupus Erythematosus (SLE) treated at FAI2R network centers.
The study is ongoing, started in March 2020, with an estimated inclusion target of 530 patients.
Alsinova’s role: Provide full-service CRO support. The goal: Through a “pilot” study, qualify the profile of patients using an online health service to offer design recommendations for prospective cohorts in lupus studies.