Supportive care for systemic amyloidosis: International Society of Amyloidosis (ISA) expert panel guidelines.

Martha Grogan, Vaishali Sanchorawala, Marcia Waddington-Cruz, Eli Muchtar, John O Clarke, Paolo Milani, Yohei Misumi, Frank Bridoux, Rajiv Pruthi, Valentina Da Prat, Luis F Quintana, Riccardo Caccialanza, Fabian Aus dem Siepen, Antonia S Carroll

Journal: Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis 2025;32(2):93-116

PMID: 39985185

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Abstract

Systemic amyloidosis refers to a group of protein misfolding disorders resulting in organ deposition with amyloid, leading to organ dysfunction, ultimately resulting in organ failure and death if not successfully treated. Treatment is type-specific and aimed at the underlying source of the misfolded protein. In the past decades, treatments have become increasingly available across the various amyloidosis types with improved response rates and longer survival. Supportive care measures are an integral part of care for patients with systemic amyloidosis to improve symptom burden and quality of life, reduce healthcare costs, and potentially prolong survival while type-directed therapy takes effect. In these guidelines, we provide supportive care recommendations across eight areas of interest in systemic amyloidosis: cardiology, nephrology, peripheral neuropathy, central nervous system involvement, autonomic neuropathy, gastroenterology, coagulopathy and bleeding, nutrition and hematology. These guidelines were developed on behalf of the International Society of Amyloidosis (ISA) by experts in the above fields and provide the best available evidence and expertise for supportive care in these rare disorders.

Address: Division of Hematology, Mayo Clinic, Rochester, MN, USA.; Department of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA.; Department of Cardiology, Angiology and Respiratory Medicine, University Hospital Heidelberg, Heidelberg, Germany.; National Amyloidosis Referral Center, CEPARM, University Hospital, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil.; Department of Neurology, Graduate School of Medical Sciences, Kumamoto University, Kumamoto, Japan.; Faculty of Medicine and Health, Brain and Mind Centre, Translational Research Collective University of Sydney, Sydney, Australia.; Department of Neurology, Royal Prince Alfred Hospital, Sydney, Australia.; Department of Neurology and Neurophysiology, St. Vincent's Amyloidosis Centre, St. Vincent's Hospital, Sydney, Australia.; Division of Gastroenterology and Hepatology, Stanford University, Redwood City, CA, USA.; Amyloidosis Center, Boston University Chobanian and Avedisian School of Medicine, Boston Medical Center, Boston, MA, USA.; Department of Molecular Medicine, University of Pavia, Pavia, Italy.; Amyloidosis Research and Treatment Center, Fondazione Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Policlinico San Matteo Pavia, Pavia, Italy.; Clinical Nutrition and Dietetics Unit, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy.; Amyloidosis and Myeloma Unit, Nephrology Department, National Reference Center on Complex Glomerular Disease (CSUR), Hospital Clínic de Barcelona, IDIBAPS, University of Barcelona, Barcelona, Spain.; Department of Nephrology, Centre Hospitalier Universitaire, National Reference Center for AL amyloidosis, MGCS and MGRS, Université de Poitiers, Poitiers, France.

DOI: 10.1080/13506129.2025.2463678

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Full Text Sources:

https://www.tandfonline.com/doi/10.1080/13506129.2...

MeSH Terms: Humans, Amyloidosis, Quality of Life