What You Should Know:
– Orsini, a leader in rare disease pharmacy solutions, announced today a new partnership with PicnicHealth, a health technology company dedicated to simplifying observational research.
– This collaboration enables rapid development of drug-specific registries that combine real world drug data, curated electronic medical records (EMR) and patient-reported perspectives. The result is more comprehensive real-world data on approved therapies, providing deeper insights into patient treatment journeys and medication adherence to improve care for rare disease patients.
Enhancing Rare Disease Research Through Strategic AI-Driven Partnerships
In 2024, PicnicHealth launched a life sciences research platform to streamline observational research and help life sciences companies achieve study endpoints. Leveraging advanced artificial intelligence (AI), the platform accesses universal patient records from consented individuals to capture relevant study data. This innovative approach enables the rapid development of drug-specific registries that integrate:
– Real-world drug data
– Curated electronic medical records (EMRs)
– Patient-reported outcomes
These registries enhance research efficiency and improve patient outcomes by delivering actionable insights.
Similarly, Orsini introduced ORBIT™ (Orsini Rare Business Intelligence Technology), an AI-powered reporting and analytics platform designed to optimize care for rare disease patients. The collaboration between PicnicHealth and Orsini is poised to generate meaningful insights into patient adherence and long-term outcomes, fostering the success of specialized therapies within rare disease populations.
To initiate this venture, PicnicHealth and Orsini partnered with AstraZeneca, a global biopharmaceutical leader, to support insights on WAINUA™ (eplontersen). WAINUA, an FDA-approved treatment for hereditary transthyretin-mediated amyloid polyneuropathy (hATTR-PN or ATTRv-PN), is distributed exclusively through Orsini Specialty Pharmacy.
Brandon Tom, CEO of Orsini, emphasized the significance of this collaboration, stating that adherence is critical for ensuring successful patient outcomes, particularly in rare disease communities. He highlighted that the partnership represents a meaningful step toward achieving Orsini’s mission to ensure no patient is left behind.
WAINUA™: Important Safety Information
Patients prescribed WAINUA should be aware of the following safety considerations:
– Potential Side Effects:
– Low Vitamin A Levels: A common but serious side effect requiring vitamin A supplementation as directed by a healthcare provider. Patients should report vision issues (e.g., night blindness or dry eyes) to their physician, who may refer them to an eye specialist.
– Other Common Side Effects: Vomiting and decreased vitamin A levels.
– Precautions:
– Pregnancy and Breastfeeding: WAINUA may alter vitamin A levels, potentially harming an unborn baby. Its effects on breast milk are unknown; discuss with a healthcare provider.
– Drug Interactions: Inform the healthcare provider about all medications, supplements, and vitamins, particularly vitamin A or beta-carotene supplements.
Through these collaborative efforts, PicnicHealth, Orsini, and AstraZeneca are driving advancements in rare disease care and research, offering renewed hope to patients living with hATTR-PN.
