Research Programs
Collaboration is essential to accelerate research.
The Amyloidosis Research Consortium has an end-to-end research model focused on accelerating the development of and access to new, effective treatments. Our major research initiatives and programs are designed to navigate and eradicate the hurdles standing in the way of progress, attract more investment and expand the amount of data available to drive progress.
Key Initiatives
ARC is committed to building strategic collaboration and an ecosystem of partners that create impact and drive reciprocal value together. Our innovative and rigorous programs are reshaping the research landscape in amyloidosis.
The Amyloidosis Forum
The Amyloidosis Forum is a public-private partnership between ARC and the U.S. Food and Drug Administration (FDA). Optimizing innovation and accelerating drug development through cross-disciplinary collaboration with academia, industry, regulators and other partners to reshape clinical trial design and accelerate the approval of treatments and cures for patients.
ATTR-QOL
ARC has developed a unique patient reported outcome (PRO) tool to provide the research field with a single, standardized questionnaire that eliminates gaps in measurement and is appropriate for use for any ATTR subtype or symptomatology. Use of the ATTR-QOL will expand our understanding of patients’ assessment of the clinical benefit of different treatments, while capturing data on outcomes that matter most to patients.
Data sharing
With the belief that data sharing is critical to research progress, ARC has created a pathway to centralize and standardize data, using a shared platform, to support collaboration and accelerate amyloidosis disease characterization. Analyzing combined datasets creates opportunities to improve clinical trial design and accelerate therapeutic development.
Research roadmap
This white paper was derived with input from 78 cross- stakeholder experts representing 61 institutions from 13 countries. The roadmap frames a priority agenda around the following themes: basic research, translational research, improved diagnosis, clinical trial design, market access, and health systems optimization.
ASPIRE: Amyloidosis Industry Collaborative
ASPIRE convenes partners across amyloidosis companies to identify areas of impact and co-design collaborative solutions in a pre-competitive space. ASPIRE is focused on addressing some of the most urgent issues and unmet needs faced by the amyloidosis community. Together, we aim to accelerate progress in diagnosis, care, and health equity.
