Welcome to EURO-LEARN, a project aimed at increasing the awareness of Cardiac Amyloidosis for professionals and patients.

Amyloidosis is the term for a group of rare diseases in which abnormal proteins deposit as amyloid in tissues and organs. Amyloid is produced when abnormal proteins in the body „misfold“ and collect together in various tissues and organs, including the heart. As the amyloid builds up, it starts to cause organ damage, impair quality of life, and this may result in heart failure and arrhythmias.

EURO-LEARN is created to help both professionals and patients to gain more knowledge and awareness of clinical imaging in this field. Most important is to improve the indications and skills of the professional around the bone scanning procedurals for cardiac amyloidosis.

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THE ILLNESS ITSELF

Cardiac amyloidosis is a disorder caused by deposits of an abnormal protein (amyloid) in the heart tissue which make it hard for the heart to work properly.

Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a gradually progressive and ultimately fatal condition characterised by the deposition of amyloid fibrils from liver-derived transthyretin (TTR) in the myocardial extracellular space. ATTR-CM can be classified as sporadic, associated with the deposition of wild-type transthyretin (ATTRwt), or hereditary, associated with genetic variants of TTR (ATTRv).

Historically there has been a mismatch between the number of clinical diagnoses of ATTR-CM and autopsy findings where cardiac ATTR amyloid deposits have been observed in up to a quarter of elderly individuals. In recent years, greater awareness of ATTR-CM as an under-recognised cause of heart failure, coupled with an ageing population and advances in diagnostic techniques, have resulted in a dramatic increase in new clinical diagnoses of ATTR-CM.

For example, the prevalence of ATTR-CM is currently estimated at ~1 in 7 patients with heart failure with preserved ejection fraction (HFpEF) and 1 in 6 with severe aortic stenosis (AS) requiring transcatheter aortic valve replacement. Based upon these statistics and the growing population of elderly people in Europe (100 million), the prevalence of (unrecognised) ATTR-CM in Europe in this group will increase.

For more information on the disease, please have a look at the following websites:

Groningen Amyloidosis Center of Expertise
Amyloidosis Alliance

3–13 people per million
per year suffer from
amyloidosis.

The average survival
is around 1 year.

1 per 1,000 people in developed countries
die yearly.

The prognosis is improved with treatment.

3–13 per million per year people suffer from amyloidosis. There is no cure at the moment. The key to successfully stopping the disease is appropriate therapy.

WHY IS THIS PROJECT SO IMPORTANT?

In the past, cardiac amyloidosis was thought to be untreatable and rapidly fatal. However, the field is changing rapidly and the role of bone scintigraphy in cardiac amyloidosis is rising. There are different types of amyloidosis that affect the heart in different ways. Today, many people can expect to survive and experience a good quality of life for several years after diagnosis. It is therefore important to increase the awareness of the disease and treatment options.

In addition to “conventional” bone scintigraphy, EURO-LEARN will share new imaging developments and breakthroughs in Cardiac Amyloidosis, such as 18F-SodiumFluoride (NaF) PET and the specific targeting amyloid PET compounds 18F-florbetapir and 18F-flobetaben.

The average survival is around 1 year

In many cases time is fought with no luck. This has to be improved!

Insufficient knowledge

We know a lot about amyloidosis, but still too little to prevent the disease on time.

Too late help

In many cases it is too late for treatment. There is very little awareness among potential patients.

What we can do

Supportive care, directed at the underlying cause, dialysis, organ transplantation. That is all we can do so far.

We can learn and certify

Thanks to the eLearning course on cardiac amyloidosis you can learn more and obtain a professional certificate.

But WE CAN TRY to help people earlier!

As a certified professional you will be able to recognise amyloidosis easier and help your patients much faster and more efficiently.

Education, eLearning, knowledge flow, certification!

EURO-LEARN is here to educate, create a knowledge base for patients and specialists to exchange knowledge and experiences. We want to provide support in two ways – both for patients and for doctors who can explore the disease, learn to recognise it in advance and increase international relationships between specialists to help and ensure the development of medical knowledge. This is made possible with the certified eLearning course on Cardiac Amyloidosis!

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PROJECT SUPPORTED BY TRUSTED PARTNERS

The project is supported by The European School of Multimodality Imaging & Therapy (ESMIT), the European Association for Nuclear Medicine (EANM) and European Association of Cardiovascular Imaging (EACVI).