Directory FAQ

Centers included in the ISA Center Directory must demonstrate core capabilities consistent with recognized multidisciplinary approaches to amyloidosis care. Multidisciplinary amyloidosis centers may exhibit different levels of expertise and deliver varying levels of care, as recognized in ISA’s position statement : “A collaborative approach to amyloidosis and a multidisciplinary care framework”

To be listed, a center should provide information about the following:

• Multidisciplinary expertise, including access to clinicians in hematology, cardiology, nephrology, neurology and pathology.
• Diagnostic capability, including Congo red staining, amyloid typing (on site or through partner laboratories), and access to genetic testing for transthyretin and other clinically relevant mutations.
• Experience across key amyloidosis subtypes, including AL, hereditary transthyretin (ATTRv), wild-type transthyretin (ATTRwt) and AA amyloidosis, with documented referral pathways for rarer subtypes.
• Treatment access, either through delivery of standard therapies for AL and ATTR amyloidosis or through established referral pathways to appropriate centers.
• Public transparency, with a webpage describing the center’s amyloidosis services, diagnostic access, treatment options and referral contacts.
• Accurate and complete information, submitted through the official ISA Center Directory Form.

Additional Capabilities

Some centers provide expanded services such as:

• cardiac MRI and nuclear imaging
• mass spectrometry for amyloid typing
• stem cell transplantation or organ transplantation
• access to clinical trials
• genetic counselling
• specialty pharmacy services
• telemedicine support
• psychosocial support.

These capabilities are self-reported and published to help patients and providers understand the range of services available at each center. ISA does not independently verify, inspect or certify these services.

Application and Updates

Centers apply for listing by completing the ISA Center Directory Form and providing publicly accessible information about their services.

Listed centers must:

• confirm their information at least annually, and
• notify ISA of any material changes to their services, capabilities or contact details.

ISA may request updates or clarifications at any time to maintain directory accuracy.

Please contact info@isaamyloidosis.org regarding update and change requests.

Changes to Listings

ISA may modify, suspend or remove a listing at any time if information becomes outdated, incomplete or inconsistent, or if ISA determines that the listing no longer meets the directory criteria. ISA may also revise its directory criteria or structure as needed.

Contact

Centers or individuals with questions about the ISA Center Directory may contact the ISA Office: info@isaamyloidosis.org