Frequently asked questions

How can I contact the Amyloidosis Expertise Center?

The Expertise Center’s outpatient clinic has an office which is reachable on the following telephone numbers:
From Monday to Friday, 08:00-16:30
For patients: +31 50 361 34 00
For referring doctors: +31 50 361 91 24
It is also possible to contact the specialist on duty via the UMCG telephone exchange, on +31 50361 61 61.
You can also reach us by email: amyloid@umcg.nl.
This information is also on our Contact page.

How can I request a peer consultation with the Amyloidosis Expertise Network?

If you would like to confer with one of the care providers in the Amyloidosis Expertise Network by telephone, you can do this from Monday to Friday between 8:00 and 16:30 on +31 50 361 91 24. But you can also email us at amyloid@umcg.nl.

What is the purpose of the subcutaneous abdominal fat puncture in determining the type of amyloidosis?

The typing of amyloid is usually carried out immunohistochemically, using biopsies of organs or of the intestine. Subcutaneous abdominal fat aspiration is a low-impact and far less invasive method to determine the presence of amyloid, and has a high sensitivity. An immunochemical method (ELISA-4-Fat) has been developed in the GrACE Expertise Center to characterize the amyloid in abdominal fat. When a large amount of amyloid is present in the adipose tissue, the type (AL-kappa, AL-lambda, AA or ATTR) of amyloid can, in most cases, be reliably determined. Another chemical method (proteomics) using mass spectrometry is under development, and the first tests are promising. In particular, the combination of both methods appears to have a lot of potential. In the Expertise Center for Malignant Hematological Diseases in Utrecht, an immunoelectron microscopic method for typing amyloid was recently adopted from Pavia in Italy. This method also gives good results when typing amyloid.

What is a SAP scan and what benefits does it have for patients?

In a SAP scan, the purified serum amyloid P component (SAP), which is a human protein that binds to amyloid, is tagged to radioactive iodine to work as a sort of tracker (123I) to detect large amounts of amyloid in the body. A scintigram is made one day after intravenous administration. This is a kind of photograph showing where in the body (often the exact location is determined simultaneously via a low-dose CT scan) most of the radioactivity remains. This makes amyloid in many organs (such as the liver, spleen, kidneys, joints, bone marrow and adrenal glands) clearly visible. The organ uptake pattern can give an indication of the type of amyloid. The severity of amyloid accumulation is often visible, and we can continue to use this method during treatment to check the effects of treatment. Because the nerves and heart are poorly imaged with this scan, it is less suitable for patients with ATTR amyloidosis (who often have nerve and/or heart involvement). In people with AL and AA amyloidosis, on the other hand, it is usually useful. Since 1990, the SAP scan has only been performed at the Royal Free Hospital in London and at GrACE in the UMCG in Groningen.

What is an MRI scan and how does it help patients?

An MRI, or magnetic resonance imaging, is a scan that uses magnetic resonance to distinguish differences in soft tissue composition. Especially the water content of tissue plays an important role here. Sometimes gadolinium is used, making it possible to include things such as blood flow in the image. A CMR is an MRI of the heart. MRI plays an important role in detecting amyloidosis in the heart. Thickening of the heart walls and valves can be made clearly visible. Gadolinium also plays a major role here. A problem known as the zeroing of the heart can indicate amyloidosis. Late gadolinium enhancement (LGE) of the heart wall is strongly indicative of amyloidosis. A new technique, known as T1 myo-mapping, helps us get information about the space in the heart wall outside the blood vessels. This extravascular compartment is enlarged in amyloidosis because the amyloid is deposited here. The volume of this space can continue to be measured during treatment to see if there is any change.

What is an MIBG scan and how does it help patients during treatment?

In an MIBG scan, a substance called metaiodobenzylguanidine (MIBG) is coupled to a tracer (a radioactive element) and administered intravenously. MIBG is similar to norepinephrine, a neurotransmitter found in nerve endings. Because MIBG behaves almost identically to norepinephrine, we can detect when nerves that affect the heart are damaged. The scan shows when there is less activity than expected in the heart, and that this activity also subsides more quickly. Not only can this detect impaired nerve function of the heart, but it appears that it may also be an early test for heart involvement in (ATTR) amyloidosis.

What symptoms may be indicative of amyloidosis?

That’s a tricky question. As amyloidosis is an insidious disease that develops gradually and can manifest in many different ways, there is no single easy answer to this question. There are, however, a number of contexts where suspicion of amyloidosis may arise:

  • The development of protein loss in the urine in cases of long-term inflammatory conditions, such as rheumatoid arthritis.
  • The onset of heart failure, proteinuria, renal failure, polyneuropathy (that is not due to treatment) or organ enlargement in a patient with multiple myeloma.
  • Presence of two or more conditions that are both not well understood, such as unexplained heart failure, progressive polyneuropathy, proteinuria or renal failure, unexplained organ enlargement (liver, spleen), severe diarrhea or constipation, unexplained orthostatic hypotension.
  • A member of a family with a history of hereditary amyloidosis.
  • An older man with unexplained heart failure with preserved ejection fraction who has previously experienced carpal tunnel syndrome or is known to have spinal stenosis.
What should I do in an emergency?

Amyloidosis is a serious, chronic condition that affects vital organs. In an emergency, it is important that care providers are made aware. In an emergency, it is best to contact the physician or practitioner in the Amyloidosis Expertise Center (see Contact page).

Can I get a diagnosis from the Amyloidosis Expertise Center?

If you have symptoms and/or complaints that may be indicative of amyloidosis, you can contact the Amyloidosis Expertise Center at the UMCG for a diagnosis. If your doctor or physician suspects amyloidosis, a referral or consultation is possible.

What can the Amyloidosis Expertise Center offer me as a patient?

The Amyloidosis Expertise Center has a great deal of knowledge of diagnosis, the characteristics of the different types of amyloidosis, and the severity, extent and risks of the condition. This specialized knowledge allows us to determine expectations and choose effective treatment pathways with the best treatment result in the long term.
The specialized physicians at the Expertise Center also provide information about the condition to care providers, as well as advice on customized care.

What can the Amyloidosis Expertise Network offer me as a healthcare provider?

In addition to assistance with diagnostics and treatment, care providers from the Amyloidosis Expertise Network are happy to remain involved in any problems at home. To discuss problems and ask questions, you are welcome to consult the Amyloidosis Expertise Center at the UMC Groningen. Our goal is to provide the best possible care and to support patients and healthcare providers as much as possible in the home environment.

> Is the healthcare in the Amyloidosis Expertise Center better than in another hospital?

As there are experienced doctors working in the Expertise Center who have a lot of specialized knowledge of amyloidosis and its treatment, there are many advantages to visiting our center. We provide detailed information about the type, severity and extent of the amyloidosis and you will be monitored regularly after treatment. The Center of Expertise is able to select the treatment with the best long-term results, drawing on all of the knowledge and experience available to us.
Your treating physician is therefore advised to contact the Amyloidosis Expertise Center if they suspect amyloidosis.

How can I get a referral to the Amyloidosis Expertise Center?

For an appointment with a specialist at the Expertise Center, you’ll need a referral from your general practitioner or treating specialist.
Ask your doctor or specialist if you suspect you have amyloidosis and want to be referred.

Which patients with amyloidosis are eligible for registration?

The aim is to register all patients with all types of systemic amyloidosis and local amyloidosis in a national register (the NAR). Our goal is to get the best possible impression of patients’ situations, and to gain an insight into the disease on a national level. This register is just one of the tasks of the Amyloidosis Expertise Center (GrACE).

What does a visit to the Amyloidosis Expertise Center look like?

During a visit to the outpatient clinic of the Amyloidosis Expertise Center at UMC Groningen, you will meet the specialist and an initial plan will be drawn up. Additional medical examinations will then be carried out, such as a blood or urine test, a fat puncture, a bone scan or a genetic examination. What tests are necessary depends very much on the reason for referral.

Why are additional medical tests done after amyloidosis has already been diagnosed?

Amyloidosis is a complex, chronic condition which develops in an unpredictable way. It can manifest in multiple places in the body. Because symptoms and disease characteristics are not the same for every patient, it is difficult to come to a more detailed diagnosis. Additional examinations to determine the type, severity and extent of disease give the specialist a clear picture of which organs are affected, and this also allows treatment to be adjusted when necessary. This prevents unnecessary damage to health.

Are medical examinations always reimbursed?

All physical examinations necessary to make a diagnosis of amyloidosis are reimbursed by the health insurer. This also applies to the additional medical tests required to determine the type, severity and extent of disease. All treatments for amyloidosis that are covered by the basic Dutch health insurance package will be reimbursed by your health insurer. Treatments for amyloidosis which do not fall under basic coverage are sometimes reimbursed if they are covered by supplementary health insurance. For more information about reimbursement, please contact your health insurance company.

How does the Expertise Network work with my own doctors?

After referral, doctors from the Amyloidosis Expertise Network will let you know about what type of amyloidosis you have, its severity, extent, and the treatment. They will explain which parts of the treatment take place in the Amyloidosis Expertise Center at UMC Groningen, and what can be done closer to home. The latter can be in a treatment center, with your own referring doctor, or with another doctor nearby. To be able to assess whether the disease is (sufficiently) responding to treatment, we will need to agree how to effectively monitor your situation and we will keep you under review at the Amyloidosis Expertise Center at UMC Groningen (this can also be done via ICT/telecommunication). Of course, this applies to an even greater extent if you are participating in drug research into new treatments.

Is scientific research being done on amyloidosis and its treatment?

There is continuous scientific research into amyloidosis and potential treatments. To read more about scientific research and participation in scientific research, take a look at our News and Ongoing Research section (Expertise Center).

What should I take into account as a general practitioner when caring for a patient with amyloidosis?

After your patient has been diagnosed with amyloidosis, you will continue to see them in your practice. Because amyloidosis is a rare condition and you most likely have never had a patient with this disease in your practice before, a GP pamphlet is available that describes what you should take into account when caring for a patient with amyloidosis.
The pamphlet ‘Information for the general practitioner about amyloidosis’ is published by NHG, VSOP and the patient organization Amyloidosis Nederland (SAN) and contains information for the general practitioner about amyloidosis.
In addition to information about epidemiology, clinical symptoms, diagnostics, disease course and treatment, information is also provided on key focus points for the general practitioner, as well as some useful websites.


Coming soon