Patient and Family Perceptions of Real-Time Access to Electronic Health Information: A Social Media Survey.

Objective:  This study seeks to understand pediatric rheumatology patients' and caregivers' utilization and perceptions of immediate access to their electronic health information (EHI) via patient portals.

Methods:  An anonymous, 23-question Qualtrics survey was distributed via social media to patients and families with pediatric rheumatic diseases. The survey link and Quick Response (QR) code were posted on disease-specific Facebook accounts.

Meeting report: patient and caregiver recommendations for a mobile health application for paediatric systemic lupus erythematosus.

Paediatric systemic lupus erythematosus (pSLE) management and research could be enhanced by a mobile health application (app); however, no app designed for pSLE is currently available. A development and design committee comprising of patients, parents/caregivers and other stakeholders met to inform development and design of an app specific for pSLE. This meeting report summarises the group's discussions and recommendations that could help create a useful and desirable app or mobile health tool for the pSLE community.

Calcinosis in juvenile dermatomyositis: Updates on pathogenesis and treatment.

Calcinosis, or the deposition of insoluble calcium salts in the skin, subcutaneous tissue, fascia, tendons, and muscles, is a feared complication of juvenile dermatomyositis. Calcinosis is estimated to affect up to 40% of patients with juvenile dermatomyositis and contributes to significant disease morbidity. Calcinosis can be challenging to treat, and the most effective treatment remains unknown because of a lack of comparative studies.