**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.**
Tobias Dittrich, Heidelberg University Hospital, Medical Clinic V (Hematology, Oncology and Rheumatology) and Institute of Medical Informatics, Heidelberg, Germany
Tobias.Dittrich@med.uni-heidelberg.de

**Main Body of the Abstract**
Acquiring patient-reported outcomes (PROMs) such as health-related quality of life (HRQoL) is essential for monitoring and improving patient care in systemic amyloidosis. A patient-centered outcome assessment tool for AL amyloidosis has been recently developed using PROMIS and PRO-CTCAE measures. Our local Institute of Medical Informatics has developed an academically-driven, open-source Electronic Data Capture (EDC) tool with electronic health record (EHR) integration. Using this tool and the recently validated instruments, we collect HRQoL data from AL amyloidosis patients at our center, both prospectively and longitudinally in the context of routine clinical care, beyond the confines of clinical trials. This approach aims to eliminate redundant data acquisition and is expected to ensure continuous and comprehensive data gathering in a real-world setting.
Our infrastructure supports collaborative research efforts through a federated study database, utilizing the established portal of medical data models as a central repository. The modular nature of our system allows for easy adaptation and expansion, including the incorporation of ATTR amyloidosis patients after validating PROMs in this cohort. Due to its interoperability, our EDC tool can be integrated in various EHR systems and data analysis pipelines.
The international amyloidosis research community is invited to collaborate and utilize this state-of-the-art infrastructure. The goal is to establish a federated, multi-center, multi-disciplinary, and international database of patient-reported outcome measures (PROMs) in systemic amyloidosis. This effort aligns with the FAIR principles and enables a comprehensive understanding of the disease's impact on quality of life, guiding future therapeutic interventions.



A Platform for Federated Acquisition of Health-related Quality of Life Data in Systemic Amyloidosis PC39 (#251)

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.