ATTRv Amyloidosis

New ATTRv amyloidosis research, summarized each month in plain language.

2026 so far: So far in 2026 (January to September), gene-silencing therapies repeatedly showed sustained TTR lowering with neuropathy measures that were often stable or worsened more slowly, alongside more attention to switching strategies and earlier detection. Read the 2026 review

We also cover clinical trials.

Yearly update

2026 so far

January–September
  • Gene silencers over time. Evidence shifted from short-term stability to multi-year follow-up.
  • Switching after tafamidis. More real-world switch/add-on reports appeared as 2026 progressed.
  • Patisiran vs inotersen. Routine-care comparisons highlighted tolerability and neuropathy-score differences.
  • Eplontersen updates. Focus moved from exploratory PN analyses to CM trial readiness.
  • CNS and eye gap. Consensus and case reports repeatedly underscored CNS/eye unmet need.
New

September 2026

Monthly research update
  • Gene-silencing drugs. They were linked with slower nerve worsening, especially early.
  • Treatment switching. After tafamidis worsening, switching to patisiran slowed nerve decline.
  • Earlier genetic testing. Targeted pathways and checklists may speed testing for carriers.
  • Formal nerve tests. Formal testing often found neuropathy missed in heart-focused care.

August 2026

Monthly research update
  • CNS treatment limits. Approved therapies are not expected to stabilize CNS involvement.
  • TTR blood lowering. Monthly eplontersen substantially lowered blood TTR at steady state.
  • Nerve and heart timing. In Val122Ile, neuropathy often appeared early; heart overlap increased later.
  • Screening test disagreement. Heart, nerve, and gut screening tests sometimes gave different results.

July 2026

Monthly research update
  • Nerve symptom control. Routine-care data linked patisiran to steadier nerve scores than inotersen.
  • Stopping from side effects. Stopping due to side effects was reported more often with inotersen.
  • Response prediction test. A sweat-and-skin measure showed an early signal, not ready for use.

June 2026

Monthly research update
  • Silencing over time. Transthyretin stayed low, and many nerve measures stayed stable.
  • Diflunisal over time. Several disease measures worsened over time, despite some benefit signals.
  • Nerve change markers. Hand testing and a blood marker tracked worse disease stage.
  • Post-transplant EEG. EEG slowing was linked to brief episodes and shorter survival.

May 2026

Monthly research update
  • Steady TTR lowering. In trial analyses, vutrisiran lowered blood transthyretin (TTR) levels steadily across different ATTR types.
  • Eplontersen trial starting point. A report described who enrolled in a large eplontersen heart trial, but it did not yet report symptom or outcome results.
  • Biopsy detection rates. In one ATTRv neuropathy comparison, nerve biopsy detected amyloid more often than fat or skin samples.
  • Early rhythm problems. In newly diagnosed ATTR cardiomyopathy (ATTR-CM), continuous monitoring found frequent new rhythm problems early on.

April 2026

Monthly research update
  • Stable nerve measures. Two reports of TTR-lowering therapy found nerve and daily-function measures stayed broadly similar over short follow-up in the groups studied.
  • Blood marker and stage. A blood marker linked to nerve injury differed across disease stages in one study.
  • Heart detection tools. Heart imaging and ECG-based models flagged ATTR cardiomyopathy in some datasets, but accuracy varied across studies and settings.

March 2026

Monthly research update
  • Gene-silencing across variants. Gene-silencing treatment effects looked broadly similar across genetic subgroups, but this has not been proven.
  • Changes before symptoms. In some symptom-free carriers, imaging scans showed changes before symptoms, but the evidence is still early.
  • Nerve-injury blood markers. One blood protein linked to nerve injury rose early, while another marker was less specific for ATTRv-related nerve involvement.

February 2026

Monthly research update
  • TTR blood levels. Routine-care reports showed consistent drops in blood transthyretin.
  • After tafamidis change. After switching from tafamidis, most people were reported stable.
  • Nerve injury marker. Blood NfL helped separate symptomatic from asymptomatic carriers.

January 2026

Monthly research update
  • Post-transplant treatment. After domino transplant, symptoms often stayed steady on tafamidis; some stabilized after siRNA.
  • Nerve test changes. Nerve tests could worsen even when symptoms felt stable.
  • Carrier risk flags. Health-record tools more precisely flagged likely V142I carriers.

Get the monthly update by email

Subscribe here to receive an email when a new monthly ATTRv amyloidosis update is published. You can unsubscribe at any time. Your address is used for this only; delivery is handled by MailerLite (privacy policy).