**Author Listing - Lead/ Submitting Author (we will be communicating with this individual): Name, Institution, City and State where the work was done. Co-authors will be added in a separate section.**
Sabrina Rebello, Amyloidosis Research Consortium, Newton, MA

**Main Body of the Abstract**
Introduction Transthyretin amyloidosis (ATTR) is a progressive, multisystem disease caused by gene variants (ATTRv) or age-related wild-type transthyretin (ATTRwt) amyloidosis. Patients are benefitting from recent advances in treatment and increased disease awareness; however, their diagnostic journey is often lengthy and challenging. This analysis examined the diagnostic journey of patients recently diagnosed with ATTR amyloidosis in a cross-sectional study.
Methods In 2022 and 2023, the Amyloidosis Research Consortium conducted online surveys of amyloidosis patients. Data collected included demographic, clinical characteristics, symptoms, and diagnostic journey. Recently diagnosed included patients diagnosed January 2021 – May 2022 in the 2022 survey and patients diagnosed June 2022 – November 2023 in the 2023 survey.
Results Of the 2093 total respondents, 228 (11%) were recently diagnosed with ATTR amyloidosis (115 and 113 patients in the 2022 and 2023 surveys, respectively). Of those, 176 (77%) were diagnosed with ATTRwt amyloidosis and 52 (23%) with ATTRv amyloidosis. (Table). Mean (Standard Deviation [SD]) time from symptom onset to ATTRv amyloidosis diagnosis was 3.3 (3.2) and 2.2 (3.2) years in the 2022 cohort and 2023 cohort, respectively. Similarly, the mean (SD) time from symptom onset to ATTRwt amyloidosis diagnosis was 3.3 (6.6) and 2.4 (3.4) years in the 2022 cohort and 2023 cohort, respectively.
Conclusion These findings suggest that while the time to diagnosis from symptom onset is still lengthy, it may be improving for ATTR amyloidosis patients. Further studies are needed to evaluate the impact of increased disease awareness on earlier diagnosis and treatment interventions on patient outcomes.



**Author Listing - Lead/ Submitting Author (we will be communicating with this individual): Name, Institution, City and State where the work was done. Co-authors will be added in a separate section.**
Sabrina Rebello, Amyloidosis Research Consortium, Newton, MA

**Main Body of the Abstract**
**Introduction** Transthyretin amyloidosis (ATTR) is a progressive, multisystem disease caused by gene variants (ATTRv) or age-related wild-type transthyretin (ATTRwt) amyloidosis. Patients are benefitting from recent advances in treatment and increased disease awareness; however, their diagnostic journey is often lengthy and challenging. This analysis examined the diagnostic journey of patients recently diagnosed with ATTR amyloidosis in a cross-sectional study.
**Methods** In 2022 and 2023, the Amyloidosis Research Consortium conducted online surveys of amyloidosis patients. Data collected included demographic, clinical characteristics, symptoms, and diagnostic journey. Recently diagnosed included patients diagnosed January 2021 – May 2022 in the 2022 survey and patients diagnosed June 2022 – November 2023 in the 2023 survey.
**Results** Of the 2093 total respondents, 228 (11%) were recently diagnosed with ATTR amyloidosis (115 and 113 patients in the 2022 and 2023 surveys, respectively). Of those, 176 (77%) were diagnosed with ATTRwt amyloidosis and 52 (23%) with** **ATTRv amyloidosis. (Table). Mean (Standard Deviation [SD]) time from symptom onset to ATTRv amyloidosis diagnosis was 3.3 (3.2) and 2.2 (3.2) years in the 2022 cohort and 2023 cohort, respectively. Similarly, the mean (SD) time from symptom onset to ATTRwt amyloidosis diagnosis was 3.3 (6.6) and 2.4 (3.4) years in the 2022 cohort and 2023 cohort, respectively.
**Conclusion** These findings suggest that while the time to diagnosis from symptom onset is still lengthy, it may be improving for ATTR amyloidosis patients. Further studies are needed to evaluate the impact of increased disease awareness on earlier diagnosis and treatment interventions on patient outcomes.



Patient-reported Diagnostic Journey of Patients Recently Diagnosed with Transthyretin Amyloidosis: Data from the Amyloidosis Research Consortium’s 2022 and 2023 Amyloidosis Community Surveys PB77 (#357)

We invite you to attend the XIX International Symposium on Amyloidosis to be held in Rochester, MN.

This symposium is organized as a hybrid meeting (with the focus on in-person) held from Sunday, May 26 through Thursday, May 30, 2024.

Together with the ISA Board and members of Mayo Clinic, a very attractive scientific hybrid program is being planned. The program will cover a variety of types of systemic amyloidosis: ATTR (hereditary and wild-type), AL (light-chain), AA and less frequent forms. There will be key lectures, specific symposia including those company sponsored, oral presentations and poster sessions of accepted abstracts.

COURSE DESCRIPTION
This program will provide a comprehensive review of state-of-the-art education in systemic amyloidosis: basic science, pathophysiology, diagnosis, current and emerging treatments. Scientific presentations will include competitive oral and poster abstracts. The rapid evolution of scientific discovery and expanding treatment options has created tremendous interest in the field and this meeting will fill and important gap in educating scientists and clinicians.