**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.**
Mr James Rickard, Chief Scientific Officer, Richmond Research Institute, London, UK

**Main Body of the Abstract**
Introduction
Early Phase Clinical Trial units classically engage healthy volunteers to undertake First in Human clinical trials. With the advent of direct acting therapies such as gene editing drugs there has been a shift to first in patient trials, often with significantly longer follow up visits. Having has started undertaking gene editing trials in Amyloidosis patients, necessitating a change in practices to provide an equitable experience.
Methods
From September 2023 a patient panel was formed to gather feedback, this consisted of a quarterly meeting to answer structured questions and monthly meeting collecting unstructured feedback. Feedback from these sessions was shared across the unit to allow teams to create solutions to improve areas patient could be improved. This resulted in feedback questionnaire being redesigned to be more user friendly while retaining the same questions, adding a new question to gain feedback on whether patients felt they were fully informed of the procedures, study drug and safe requirements.
Results
Data was compared to identify changes to feedback from implementing patient panel suggestions for research volunteer questionnaires (0-5 scoring system) between 2021 - September 2023 (1048 responses) and September 2023 – January 2024. (151 responses). There was 9% improvement overall, 17% increase in patient understanding their visit and 13% increase in likely to recommend taking part in research.
Conclusion
Engaging patients to have a voice in their needs as research participants is an important tool in ensuring a good experience to retain patients in studies and motivate them to participate in future trials.



Experiences and benefits of setting up an Amyloidosis patient panel within an early phase clinical trials unit PC46 (#375)

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.