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.

Examples of our research initiatives to date include:

Fostering and supporting collaborative projects to optimize research from the laboratory bench to the patients’ bedside.

Working with our industry and academic partners to prioritize, define and deliver a portfolio of clinical trials, real-world evidence and natural history studies that aim to answer important clinical research questions and evolve new treatments.

Promoting and enabling data sharing within the community to advance research efforts and understanding of the disease.

Conducting a pioneering, patient-preference elicitation study which highlights the perspectives that patients and caregivers have regarding the potential benefits and risks of various treatment options and bringing those into the spotlight.

Advancing amyloidosis: A research roadmap

In 2018, the Amyloidosis Research Consortium (ARC) held a round table meeting, with international experts from academic, clinical, regulatory, patient advocacy, health policy, industry, and other key areas to identify the highest priorities and develop a research framework. A rigorous review process took place with active participation from additional experts. The resulting white paper was derived with input from 78 cross- stakeholder experts representing 61 institutions from 13 countries. The priorities are framed around the following specific themes: basic research, translational research, improved diagnosis, clinical trial design, market access, and health systems optimization. The priorities included in this white paper reflect the highest scoring ones and the overall consensus. This publication is intended to align research priorities most likely to make a significant, material contribution to improving patient outcomes. This blueprint will directly shape ARC’s research strategy and ensure our future investments will have the greatest impact on patients.

Other research support:

ARC will also support other research efforts in several ways. We are particularly interested in stimulating and advancing the careers of young researchers and physicians working in the field.

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ARC is a 501(c)(3) nonprofit organization. Tax ID: 47-2589708