18-F Florbetapir PET/MR scan for Amyloidosis

Phase-Based Progress Estimates
Mayo Clinic in Rochester, Rochester, MN
18-F Florbetapir PET/MR scan - Other
All Sexes
Eligible conditions

Study Summary

This study is evaluating whether a PET scan can help diagnose patients with amyloidosis.

See full description

Treatment Effectiveness

Effectiveness Progress

1 of 3

Study Objectives

This trial is evaluating whether 18-F Florbetapir PET/MR scan will improve 2 primary outcomes and 4 secondary outcomes in patients with Amyloidosis. Measurement will happen over the course of 50-120 minutes post injection.

50-120 minutes post injection
Additional sites of 18-F Florbetapir uptake
Locations of peripheral nerve 18-F Florbetapir uptake
Morphologic changes
Pattern of F-18 Florbetapir uptake (Heterogeneous vs. Homogeneous, focal vs. diffuse)
Pattern of contrast enhancement (Solid, heterogeneous or peripheral enhancement)
T1 and T2 characteristics (Hypointense, isointense or hyperintense relative to skeletal muscle)

Trial Safety

Safety Progress

1 of 3

Trial Design

1 Treatment Group

Peripheral nerve amyloidosis
1 of 1
Experimental Treatment

This trial requires 10 total participants across 1 different treatment group

This trial involves a single treatment. 18-F Florbetapir PET/MR Scan is the primary treatment being studied. Participants will all receive the same treatment. There is no placebo group. The treatments being tested are in Phase 1 & 2 and have already been tested with other people.

Peripheral nerve amyloidosis
Patients with pathologically-confirmed peripheral nerve amyloidosis will undergo 18-F Florbetapir PET/MR scan on a GE SIGNA PET/MR scanner.

Trial Logistics

Trial Timeline

Approximate Timeline
Screening: ~3 weeks
Treatment: Varies
Reporting: 50-120 minutes post injection
This trial has the following approximate timeline: 3 weeks for initial screening, variable treatment timelines, and roughly 50-120 minutes post injection for reporting.

Who is running the study

Principal Investigator
S. M. B.
Stephen M. Broski, Principal Investigator
Mayo Clinic

Closest Location

Mayo Clinic in Rochester - Rochester, MN

Eligibility Criteria

This trial is for patients born any sex aged 18 and older. There are 2 eligibility criteria to participate in this trial as listed below.

Mark “yes” if the following statements are true for you:
Adults: 18-100
Pathologically-confirmed peripheral nerve amyloidosis or pathologically-confirmed non-amyloid causes of peripheral neuropathy

Patient Q&A Section

What causes amyloidosis?

"The risk factors of amyloidosis are multifactorial, and are likely to be influenced by many factors, some of which have genetic components. The risk factors for AL-related amyloidosis are predominantly familial, including the ESR1 gene." - Anonymous Online Contributor

Unverified Answer

What are the signs of amyloidosis?

"The list of amyloidosis symptoms include fatigue, unexplained weight loss, anemia, pruritic macules and papules. Blood tests should be routinely checked for the presence of these symptoms." - Anonymous Online Contributor

Unverified Answer

Can amyloidosis be cured?

"Cardiac amyloidosis is often not associated with cardiac amyloidosis but is a manifestation of systemic disease. In people with milder presentations of cardiac amyloidosis, treatment of primary systemic disease can be effective with normalization of the cardiac biomarkers. Further studies are needed to assess the feasibility and efficacy of early diagnosis of heart amyloidosis." - Anonymous Online Contributor

Unverified Answer

What are common treatments for amyloidosis?

"No curative treatment for amyloidosis is known. Treatment is focused on symptom management and the treatment of disease complications. \n\nTherapies for patients with amyloidosis that can be tried are listed below:\n- Medications for congestive heart failure, including ACE inhibitors, diuretics, angiotensin receptor blockers (ARBs), beta blockers, digoxin, and cardiomyopathies.\n- Antihypertensives for high blood pressure. Beta blockers, calcium channel blockers, and ACE inhibitors are some options." - Anonymous Online Contributor

Unverified Answer

How many people get amyloidosis a year in the United States?

"Results from a recent paper shows that amyloidosis incidence is not increasing in the US or in the UK as a whole, and may be decreasing for some AL amyloidoses, at least in the US." - Anonymous Online Contributor

Unverified Answer

What is amyloidosis?

"Amyloidosis is a disease that alters the structure, function, and stability of proteins. Amyloid proteins can be in the extracellular space, in secreted or intracellular proteins. There are several types of amyloid proteins. Amyloid proteins can change and rearrange which leads to disease. The most common type of amyloid disease is familial amyloid polyneuropathy; however, there are some types that can affect the blood plasma protein, the kidneys, the liver, or the spleen." - Anonymous Online Contributor

Unverified Answer

Is 18-f florbetapir pet/mr scan typically used in combination with any other treatments?

"The FDG-PET/MRI in combination with 18F-florbetapir is likely to be used not only in the context of AL amyloidosis, but also potentially in other AL amyloidosis subtypes." - Anonymous Online Contributor

Unverified Answer

Does 18-f florbetapir pet/mr scan improve quality of life for those with amyloidosis?

"We found no significant differences for the DLQI after 6 months of follow-up. However, there was a trend towards improvement in AL amyloidosis at 6 months, despite no clinical progression between baseline and follow-up assessments." - Anonymous Online Contributor

Unverified Answer

What are the common side effects of 18-f florbetapir pet/mr scan?

"Recent findings showed that there were no serious side effects in the group of both 18f-FL and 11f-FL PET PET scan. However, there were several side effects in the first week of PET PET scan in the 18f-FL PET scan group, and in the third and fifth week due to the 18f-FL PET PET scan or 11f-FL PET PET scan, respectively, which may be acceptable. Recent findings also showed that the uptake of the radioligand in the organs may not be the only factor affecting the severity of side effects of 18f-FL PET PET scan." - Anonymous Online Contributor

Unverified Answer

What is the average age someone gets amyloidosis?

"Although the true incidence of AL amyloidosis is unknown, our results show that the disease is more common as an adult. No studies have shown the incidence of light amyloidosis. Therefore, more detailed studies in a larger cohort are essential to determine the true incidence of AL amyloidosis and its subtypes." - Anonymous Online Contributor

Unverified Answer

Have there been any new discoveries for treating amyloidosis?

"There has been an increasing array of research relating to amyloidosis treatment using immunotherapy, stem cell therapy, and gene therapy. Immunotherapy and stem cell therapy seem promising in the treatment of amyloidosis and as far as gene therapy is concerned, it has proven successful in animal models of amyloidosis. These advances suggest new treatment options for amyloidosis and hopefully will lead into a new treatment options." - Anonymous Online Contributor

Unverified Answer

Has 18-f florbetapir pet/mr scan proven to be more effective than a placebo?

"In patients with a clinical diagnosis of amyloidosis, FET PET correlates well with clinical status and may reflect disease activity. If this finding could prove to be reproducible, FET PET may be further used as a surrogate marker for therapeutic response in patients who are undergoing treatment with FET-based agents." - Anonymous Online Contributor

Unverified Answer
Please Note: These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.
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