ARC has created a new Patient Advisory Committee to impact the future of amyloidosis treatment and care. As a patient led organization, our team at ARC recognizes the value and importance of engaging and understanding the experiences of patients and...
Advocating for Amyloidosis Patients & Families at the US Congress
ARC participated in the 2023 Rare Disease Week proceedings organized by the EveryLife Foundation alongside five amyloidosis patient and family advocates and over 600 other rare disease advocates. [caption id="attachment_6173" align="aligncenter" width="900"] Amyloidosis patient advocates and ARC staff with other...
ARC in the Field: Global Genes Health Equity Summit 2022
Special Report by: Dr. Lauren Edgar, DNP, RN, MSN-Ed., FNP Associate Director of Clinical Affairs and Education, Amyloidosis Research Consortium The 2nd Annual Global Genoese Rare Health Equity Summit in partnership with the Rare Disease Diversity Coalition took place...
ARC & ASPIRE: Partnerships for Patient-Centric Change
Earlier this month ARC announced the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact, Reach, & Equity. This initiative, independently facilitated and governed by ARC, brings together 10 different biotech & pharmaceutical companies committed to making a real impact in...
Special Report by: Dr. Johana Fajardo, DNP, ANP-BC CHFN FHFSA Infiltrative Cardiomyopathy Director, MedStar Washington Hospital Center; Chair of ARC Amyloidosis Nurse Collaborative The XVIII International Symposium on Amyloidosis (ISA) took place September 4-8, 2022 in Heidelberg, Germany. The...
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The Amyloidosis Research Consortium’s Executive Director of Research, Kristen Hsu, discussed the current clinical trial landscape in AL amyloidosis. She reviewed trials currently recruiting patients, trials expecting to share results this year, and trials that are planned to open in the future.
6:59 — AL Amyloidosis Treatment Approaches Overview
17:29 — Recruiting Trials for Novel AL Therapies in 2025
18:24 — LINKER-AL2 (linvoseltamab; relapsed/refractory AL amyloidosis)
22:08 — ETENTAMIG (ABBV-383; relapsed/refractory AL amyloidosis)
25:10 — NEXICART-2 (NXC-201; relapsed/refractory AL amyloidosis)
28:26 — ALACRITY (AZD0120; relapsed/refractory AL amyloidosis)
31:36 — AT-02 (AL amyloidosis with kidney disease)
34:12 — Future Development for Novel AL Therapies
35:23 — TECLISTAMAB (BCMA-CD3; newly diagnosed AL amyloidosis)
37:22 — RAMANTAMIG (JNJ-79635322; previously treated AL amyloidosis)
39:18 — PROT-001
40:24 — Summary of Recruiting/Upcoming Studies
41:23 — News & Upcoming Milestones for Novel AL Therapies
44:03 — Other Recruiting & Planned Clinical Trials
47:10 — How to Find Clinical Trials
50:58 — Q&A Session
51:09 — Do all trials involve cardiac involvement?
52:20 — Do any trials differentiate between light chains (Kappa vs Lambda)?
NOTE: PROT-001 is being developed specifically for lambda light chain AL amyloidosis. It’s not enrolling patients yet, but when trials start in AL patients in 2026, the focus will be on patients who have increased lambda light chain levels.
52:58 — How are “primary endpoints” decided for clinical trials?
56:07 — Are clinical trials for AL different from those for ATTR?
56:59 — How are current trials different from currently approved and available treatments?
58:51 — What are some of the biggest challenges researchers face in developing new treatments for AL amyloidosis?