Wild type ATTR amyloidosis

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2FDA treatments13Active trials9Specialists8Treatment centers3Financial resources

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Wild type ATTR amyloidosis (also called ATTRwt amyloidosis, formerly known as senile cardiac amyloidosis or senile systemic amyloidosis) is a condition in which a normal (non-mutated) protein called transthyretin becomes unstable, misfolds, and builds up as abnormal deposits called amyloid in body tissues, especially the heart. Unlike hereditary ATTR amyloidosis, this form is not caused by a genetic mutation — the transthyretin protein itself is normal ("wild type"), but it still misfolds over time, particularly with aging. The amyloid deposits gradually stiffen the heart muscle, leading to a type of heart failure called restrictive cardiomyopathy. Patients often experience shortness of breath, swelling in the legs, fatigue, and difficulty exercising. Many people also develop carpal tunnel syndrome — sometimes years before heart symptoms appear. Irregular heart rhythms (arrhythmias) and low blood pressure are also common. Wild type ATTR amyloidosis predominantly affects older men, typically over the age of 65. The treatment landscape has improved significantly in recent years. Tafamidis (brand names Vyndaqel and Vyndamax) is an FDA-approved medication that stabilizes the transthyretin protein and slows disease progression. Supportive treatments include diuretics to manage fluid buildup and careful management of heart rhythm problems. Early diagnosis is increasingly possible through specialized heart imaging techniques, which has improved outcomes for many patients.

Also known as:

Key symptoms:

Shortness of breath, especially with activitySwelling in the legs, ankles, or feetFatigue and low energyDifficulty exercising or reduced staminaCarpal tunnel syndrome (numbness or tingling in the hands)Irregular or abnormal heart rhythmsDizziness or lightheadedness when standing upLow blood pressureThickened heart muscle seen on imagingSpinal stenosis (narrowing of the spinal canal causing back or leg pain)Biceps tendon ruptureUnexplained weight lossDifficulty lying flat due to breathlessnessNausea or loss of appetite

Clinical phenotype terms (32)— hover any for plain English
Abnormal pulmonary interstitial morphologyHP:0006530Cardiac transthyretin amyloid depositionHP:0031327Pulmonary edemaHP:0100598Intermittent diarrheaHP:0002254Gastrointestinal dysmotilityHP:0002579Orthostatic hypotension due to autonomic dysfunctionHP:0004926Atrial fibrillationHP:0005110Autonomic bladder dysfunctionHP:0005341
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Late onset

Begins later in life, typically after age 50

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Feb 2026Increased Pacemaker Lower Rate in ATTR Cardiac Amyloidosis

Region Skane — NA

TrialNOT YET RECRUITING
Dec 2025ATTRACT-52: Primary Care Cardiac Amyloidosis Screening in Ordu, Turkey

Kotyora Family Medicine Health Management and Education Association — NA

TrialENROLLING BY INVITATION
Jun 2025Retrospective Identification of Scintigraphic Cardiac Amyloidosis (RISCA)

University Hospital, Lille

TrialNOT YET RECRUITING
Jan 2025Research With I-124 EVuzamitide to Elucidate Cardiac AmyLoidosis

Sharmila Dorbala — PHASE3

TrialACTIVE NOT RECRUITING
Jan 2025A Multicenter Study on Atrioventricular Regurgitation in Transthyretin Amyloid Cardiomyopathy: Definition, Prevalence, and Prognostic Impact.

Medical University of Vienna

TrialRECRUITING
Jan 2025PATHWAY-RCT: Preventing Admission To Hospital With Attr cardiomyopathY

Richmond Research Institute — NA

TrialRECRUITING
Oct 2024AI Echocardiographic Screening of Cardiac Amyloidosis

Cedars-Sinai Medical Center — NA

TrialENROLLING BY INVITATION
Jul 2024Cardiac Amyloidosis pRevaleNce of in OLDer Subjects Affected by Heart Failure

Gérond'if

TrialRECRUITING
May 2024MECKI-Amyloidosis: Assessment of the Exercise Capacity and Prognosis of Patients with Cardiac Amyloidosis

Centro Cardiologico Monzino

TrialRECRUITING
Jan 2024N-of-1 for Beta-Blockers in Cardiac Amyloidosis

Weill Medical College of Cornell University — PHASE4

TrialENROLLING BY INVITATION

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

2 available

Vyndaqel

TAFAMIDIS MEGLUMINE· Pfizer Laboratories Div Pfizer IncOrphan Drug

AMVUTTRA

VUTRISIRAN· Alnylam Pharmaceuticals, Inc.sBLA
Treatment of the cardiomyopathy of wild-type or hereditary transthyretin-mediated amyloidosis (ATTR-CM) in adults to reduce cardiovascular mortality, cardiovascular hospitalizations and urgent heart f

Treatment of the cardiomyopathy of wild-type or hereditary transthyretin-mediated amyloidosis (ATTR-CM) in adults to reduce cardiovascular mortality, cardiovascular hospitalizations and urgent heart failure visits. Expanded approval March 20, 2025.

Clinical Trials

13 recruitingView all trials with filters →
Phase 31 trial
Research With I-124 EVuzamitide to Elucidate Cardiac AmyLoidosis
Phase 3
Active
· Sites: Scottsdale, Arizona; Duarte, California +18 more · Age: 1899 yrs
Phase 41 trial
N-of-1 for Beta-Blockers in Cardiac Amyloidosis
Phase 4
Enrolling by Invitation
PI: Parag Goyal, MD, MSc (Weill Medical College of Cornell University) · Sites: New York, New York · Age: 6599 yrs
N/A5 trials
ATTRACT-52: Primary Care Cardiac Amyloidosis Screening in Ordu, Turkey
N/A
Enrolling by Invitation
PI: Seçkin Dereli, MD, Assoc. Prof. (Ordu University Faculty of Medicine, Department of) · Sites: Ordu, Ordu · Age: 6599 yrs
AI Echocardiographic Screening of Cardiac Amyloidosis
N/A
Enrolling by Invitation
PI: Lily Stern, MD (Cedars-Sinai Medical Center) · Sites: Los Angeles, California; Palo Alto, California +2 more · Age: 2299 yrs
Exercise Training and Rehabilitation In Cardiac Amyloidosis
N/A
Enrolling by Invitation
PI: Alberto M. Marrra, Md,PhD (Department of Translational Medical Sciences) · Sites: Naples · Age: 1899 yrs
PATHWAY-RCT: Preventing Admission To Hospital With Attr cardiomyopathY
N/A
Actively Recruiting
PI: Tamer Rezk, MBBS MRCP PhD (National Amyloidosis Centre, Royal Free Hospital) · Sites: London · Age: 1899 yrs
Artificial Intelligence Guided Echocardiographic Screening of Rare Diseases (EchoNet-Screening)
N/A
Actively Recruiting
· Sites: Los Angeles, California · Age: 1899 yrs
Other6 trials
International Cardiac Amyloidosis Registry
Actively Recruiting
PI: Nina Ajmone Marsan, MD, PhD (Leiden University Medical Center) · Sites: Bruges; Edegem +4 more · Age: 1899 yrs
Cardiac Amyloidosis pRevaleNce of in OLDer Subjects Affected by Heart Failure
Actively Recruiting
PI: Olivier Hanon, MD PhD (Geriatric Department, Broca hospital) · Sites: Paris, IIe-de-France; Nantes, Loire-Atlantique +34 more · Age: 8099 yrs
Registre HEAR, Healthcare European Amyloidosis Registry
Actively Recruiting
PI: Thibaud Pr Damy (Henri Mondor University Hospital) · Sites: Créteil
MECKI-Amyloidosis: Assessment of the Exercise Capacity and Prognosis of Patients with Cardiac Amyloidosis
Actively Recruiting
· Sites: Milan, Italy · Age: 18100 yrs
A Multicenter Study on Atrioventricular Regurgitation in Transthyretin Amyloid Cardiomyopathy: Definition, Prevalence, and Prognostic Impact.
Actively Recruiting
· Sites: Graz, Styria; Vienna +6 more · Age: 1899 yrs
Analysis of Lumbar Spine Stenosis Specimens for Identification of Transthyretin Cardiac Amyloidosis
Actively Recruiting
PI: Mathew S Maurer, MD (Columbia University) · Sites: Beverly Hills, California; Boston, Massachusetts +4 more · Age: 5099 yrs

Specialists

9 foundView all specialists →
MM
Mazen Hanna, MD
CLEVELAND, OH
Specialist
PI on 1 active trial
AM
Adalgisa Condoluci, MD
Specialist
PI on 1 active trial1 Wild type ATTR amyloidosis publication
JM
John L Berk, M.D.
CASTRO VALLEY, CA
Specialist
PI on 1 active trial
NP
Nicolas Verheyen, Res Prof, MD PhD
Specialist
PI on 1 active trial
TP
Torstein Hole, MD, PhD
Specialist
PI on 1 active trial
JM
Jeff Packman, MBA
Specialist
PI on 1 active trial
MR
MARK MCGOVERN, RN
Specialist
PI on 1 active trial
TP
Thibaud DAMY, MD PhD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

3 resources
Vyndaqel(TAFAMIDIS MEGLUMINE)Pfizer Laboratories Div Pfizer Inc
AMVUTTRA(VUTRISIRAN)Alnylam Pharmaceuticals, Inc.

Tegsedi

Ionis/AstraZeneca

Tegsedi Patient Support (AZ&Me)

Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

No travel grants are currently matched to Wild type ATTR amyloidosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Wild type ATTR amyloidosis

Disease timeline:

New recruiting trial: A Multicenter Study on Atrioventricular Regurgitation in Transthyretin Amyloid Cardiomyopathy: Definition, Prevalence, and Prognostic Impact.

A new clinical trial is recruiting patients for Wild type ATTR amyloidosis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.How advanced is the amyloid involvement in my heart, and what is my current heart function?,Am I a candidate for tafamidis or acoramidis, and how do I access these medications?,Has genetic testing confirmed that this is the wild type form and not hereditary ATTR amyloidosis?,What medications should I avoid because of my condition?,Are there any clinical trials I might be eligible for?,How often should I have follow-up imaging and blood tests to monitor my heart?,Should I be referred to a specialized amyloidosis center?

Common questions about Wild type ATTR amyloidosis

What is Wild type ATTR amyloidosis?

Wild type ATTR amyloidosis (also called ATTRwt amyloidosis, formerly known as senile cardiac amyloidosis or senile systemic amyloidosis) is a condition in which a normal (non-mutated) protein called transthyretin becomes unstable, misfolds, and builds up as abnormal deposits called amyloid in body tissues, especially the heart. Unlike hereditary ATTR amyloidosis, this form is not caused by a genetic mutation — the transthyretin protein itself is normal ("wild type"), but it still misfolds over time, particularly with aging. The amyloid deposits gradually stiffen the heart muscle, leading to a

How is Wild type ATTR amyloidosis inherited?

Wild type ATTR amyloidosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Wild type ATTR amyloidosis typically begin?

Typical onset of Wild type ATTR amyloidosis is late onset. Age of onset can vary across affected individuals.

Are there clinical trials for Wild type ATTR amyloidosis?

Yes — 13 recruiting clinical trials are currently listed for Wild type ATTR amyloidosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Wild type ATTR amyloidosis?

9 specialists and care centers treating Wild type ATTR amyloidosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Wild type ATTR amyloidosis?

1 patient support program are currently tracked on UniteRare for Wild type ATTR amyloidosis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.