Optimize, Collaborate and Share



Our Clinical Network speeds the delivery of new and better therapies to patients with amyloidosis.  This network consists of a highly collaborative team of core amyloidosis centers, devoted to all the types of systemic amyloidosis. The Clinical Network is focused on expediting and optimizing clinical research through efficient clinical trial design, accelerating accrual and data sharing.  By implementing a dynamic team approach when working with stakeholders and regulatory bodies, this network will address the barriers that slow down the delivery of promising therapies. 

Membership Criteria: 

The member centers make up the operating body of the Clinical Network.  Built on a foundation of academic principles, these amyloidosis centers are committed to working together to accelerate research in amyloidosis. They are responsible for designing and conducting the ARC translational research and therapeutic development projects within the Consortium. Members represent the foremost in amyloidosis research and treatment centers, and are selected based on a predetermined set of criteria. Enrollment will re-open in 2017.

Membership Criteria:

  • Number of patients per year (>20 new)
  • Multidisciplinary team, with 3 or more subspecialties involved
  • Clinical trial experience, including having participated in an amyloid industry clinical trial 
  • Publications within the field, with manuscripts published in peer-reviewed journals, not including review articles and book chapters 
  • Diagnostic ability with disease typing and imaging. Scintigraphy (DPD, PYP) and MRI are required. Mass spectrometry is not required

To learn more contact:

This guidance document is intended to outline the priorities and structure of the Network and role of participating centers. To read the guidance click on the link:


Guidance For Member Centers

Amyloidosis Center Heidelberg, Germany

Barbara Ann Karmanos Cancer Institute, Michigan, USA

City of Hope National Cancer Center, California, USA

Cleveland Clinic, Ohio, USA

French Reference Center For Familial Amyloid Polyneuropathy, Le Kremlin Bicêtre, France

Groningen Unit for Amyloidosis Research & Development (GUARD), Groningen, The Netherlands

Hospital Clínic of Barcelona, Barcelona, Spain

Kumamoto Amyloidosis Research Center, Kumamoto, Japan

Medical College of Wisconsin, Wisconsin, USA

Memorial Sloan Kettering Cancer Center, NY, USA

National Referral Center of Amyloidosis, Limoges, France

Penn Amyloidosis Program, University of Pennsylvania, USA

Princess Alexandra Hospital, Australia

Samsung Medical Center, Seoul, Korea

Stanford Healthcare, California, USA

Sylvester Cancer Center, University of Miami, USA

Vanderbilt University Medical Center, Tennessee, USA

Victorian & Tasmanian Amyloidosis Service, Australia

Westmead Hospital, Westmead, NSW. Australia

Member Centers

Our Values

All partners within the Consortium network adhere to the following principles:

  • Prioritizing patient-oriented research
  • Collegiality, transparency and democracy
  • Commitment to the highest standard of excellence in project planning, and in the collection, validation and use of patient and research data
  • Integration of research expertise from multiple sectors (academia, government, industry, nonprofit, clinical care)
  • Promotion of data and intellectual property sharing
  • Milestone-driven strategic planning
  • Dedication to education and training for junior colleagues
  • Awareness of the utmost importance of maintaining a governance structure that provides each stakeholder with an opportunity to provide input into the consortium’s strategic objectives and operations