**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.**
Ute Hegenbart, University Hospital, Heidelberg, Germany

**Main Body of the Abstract**
Background: In 2018 we have started a national registry on amyloidosis.
Objectives: Our aim for this analysis was to analyse outcome of newly diagnosed patients with AL and ATTRwt amyloidosis in Germany and validate prognostic factors in a real world setting.
Methods: The registry population consist of all reported cases of newly diagnosed amyloidosis patients between 04.01.2018 until 31.03.2020. Inclusion criteria were either a Congo Red positive tissue sample or unequivocal findings in bone scintigraphy for ATTR.
Results: Of 1200 registered patients 1158 patients fulfilled inclusion criteria. Of those, 527 patients had systemic AL and 459 patients ATTRwt amyloidosis. Median OS was 64 and 59 months for AL and ATTRwt, respectively, after a median follow-up of 55 months. Multivariate analyses (including age, cardiac stage and paraprotein parameters for AL patients) revealed the following significant parameters: higher age for AL and ATTR (HR 1.04; and HR 1.08; p<0.001), higher cardiac stage (I versus III) for AL and ATTR (HR 3.1; HR 6.99; p<0.001), IgM type (versus no heavy chain) for AL (HR 2.9; p=0.01), while there was no diffence between kappa and lambda AL.
Conclusion: The National registry is the first prospective evaluation of newly diagnosed patients in Germany. We could confirm that advanced cardiac involvement has a negative influence on OS in AL and ATTRwt reflecting the diagnosis at a late stage. We have started an extended registry in 2020 including biopsy reports of reference pathologists to estimate the incidence of AL and ATTR amyloidoses in Germany.



**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.**
Ute Hegenbart, University Hospital, Heidelberg, Germany

**Main Body of the Abstract**
_Background_: In 2018 we have started a national registry on amyloidosis.
_Objectives:_ Our aim for this analysis was to analyse outcome of newly diagnosed patients with AL and ATTRwt amyloidosis in Germany and validate prognostic factors in a real world setting.
_Methods_: The registry population consist of all reported cases of newly diagnosed amyloidosis patients between 04.01.2018 until 31.03.2020. Inclusion criteria were either a Congo Red positive tissue sample or unequivocal findings in bone scintigraphy for ATTR.
_Results:_ Of 1200 registered patients 1158 patients fulfilled inclusion criteria. Of those, 527 patients had systemic AL and 459 patients ATTRwt amyloidosis. Median OS was 64 and 59 months for AL and ATTRwt, respectively, after a median follow-up of 55 months. Multivariate analyses (including age, cardiac stage and paraprotein parameters for AL patients) revealed the following significant parameters: higher age for AL and ATTR (HR 1.04; and HR 1.08; p<0.001), higher cardiac stage (I versus III) for AL and ATTR (HR 3.1; HR 6.99; p<0.001), IgM type (versus no heavy chain) for AL (HR 2.9; p=0.01), while there was no diffence between kappa and lambda AL.
_Conclusion_: The National registry is the first prospective evaluation of newly diagnosed patients in Germany. We could confirm that advanced cardiac involvement has a negative influence on OS in AL and ATTRwt reflecting the diagnosis at a late stage. We have started an extended registry in 2020 including biopsy reports of reference pathologists to estimate the incidence of AL and ATTR amyloidoses in Germany.



Long-term evaluation of amyloidosis diseases in Germany: National Clinical Amyloidosis Registry PA123 (#355)

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.