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Table 1 RDCRN PRISM Protocols

From: A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment

Protocol Consortium Site Locations Target Accrual Study Type Intervention Type Age Disease Status
Abatacept (CTLA4-Ig) for the Treatment of Relapsing, Non-Severe, Granulomatosis with Polyangiitis (ABROGATE) Vasculitis Clinical Research Consortium (VCRC) US, Canada, UK, Ireland, Germany 66 Interventional
RCT, Phase III
• Double-blinded
• Placebo-controlled
• Investigational agent
15 years old and up Mild flare- active disease at enrollment
A Randomized, Multicenter Study for Isolated Skin Vasculitis (ARAMIS) Vasculitis Clinical Research Consortium (VCRC) US, Canada 90 Interventional
sequential multiple assignment RCT
• 3 standard of care medications 18 years old and up Active disease at enrollment
Longitudinal Evaluation of Autoimmune Pulmonary Alveolar Proteinosis (LongPAP) Rare Lung Disease Consortium (RLDC) US 100 Longitudinal, Observational • None All ages Active Disease/ Remission (no major disease activity)
Newer Direct-Acting Anti-Viral Agents as Sole Therapy of Porphyria Cutanea Tarda in Subjects with Chronic Hepatitis C Porphyrias Consortium (PC) US 49 Interventional • Open label
• One arm
18 years old and up PCT with chronic Hepatitis C
A Randomized Double-Blind Controlled Trial of Everolimus in Individuals with PTEN Mutations Developmental Synaptopathies Consortium (DSC) US 40 Interventional,
Phase I/II
• Placebo-controlled
• Investigational agent
5–45 years old Outpatients with PTEN genetic mutation
A Prospective, Multicenter Study to Compare and Validate Endoscopic, Histologic, Molecular, and Patient-Reported Outcomes in Pediatric and Adult Patients with Eosinophilic Esophagitis, Gastritis, and Colitis Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) US 1050 Observational • None 3 years old and up Active disease at enrollment