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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

ProtocolConsortiumSite LocationsTarget AccrualStudy TypeIntervention TypeAgeDisease Status
Abatacept (CTLA4-Ig) for the Treatment of Relapsing, Non-Severe, Granulomatosis with Polyangiitis (ABROGATE)Vasculitis Clinical Research Consortium (VCRC)US, Canada, UK, Ireland, Germany66Interventional
RCT, Phase III
• Double-blinded
• Placebo-controlled
• Investigational agent
15 years old and upMild flare- active disease at enrollment
A Randomized, Multicenter Study for Isolated Skin Vasculitis (ARAMIS)Vasculitis Clinical Research Consortium (VCRC)US, Canada90Interventional
sequential multiple assignment RCT
• 3 standard of care medications18 years old and upActive disease at enrollment
Longitudinal Evaluation of Autoimmune Pulmonary Alveolar Proteinosis (LongPAP)Rare Lung Disease Consortium (RLDC)US100Longitudinal, Observational• NoneAll agesActive Disease/ Remission (no major disease activity)
Newer Direct-Acting Anti-Viral Agents as Sole Therapy of Porphyria Cutanea Tarda in Subjects with Chronic Hepatitis CPorphyrias Consortium (PC)US49Interventional• Open label
• One arm
18 years old and upPCT with chronic Hepatitis C
A Randomized Double-Blind Controlled Trial of Everolimus in Individuals with PTEN MutationsDevelopmental Synaptopathies Consortium (DSC)US40Interventional,
Phase I/II
• Placebo-controlled
• Investigational agent
5–45 years oldOutpatients 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 ColitisConsortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)US1050Observational• None3 years old and upActive disease at enrollment