Amyloid NeuropathiesNCT03588468
Expanding the Biomarkers in Familial Amyloid Neuropathy: MRI and Motor Unit Estimation by Electrophysiological Study
A study testing Electrophysiological biomarkers and MRI biomarkers in people with Amyloid Neuropathies and Transthyretin Amyloidosis, run by Assistance Publique Hopitaux De Marseille at 1 site in France.
Trial summary
Familial amyloid neuropathies (FAP) are hereditary disease due to a mutation of the tranthyretin gene (TTR). These neuropathies are severe and life frightening. Asymptomatic carrier of TTR mutation are now detected in large TTR-FAP family. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Amyloid Neuropathies, Transthyretin Amyloidosis
- What is being tested?
- Electrophysiological biomarkers and MRI biomarkers
- Could I receive a placebo?
- Yes, some participants may receive a placebo
- How many people
- 60 participants
- Where
- 1 siteFrance
- Study dates
- 20 Sep 2018to 18 Dec 2019
- Phase
- Interventional
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
For a subject to be eligible, all of the inclusion criteria and none of the exclusion criteria must be met.
3.1.1. TTR mutation gene carriers 3.1.1.a. Inclusion criteria
Subject must meet the following criteria to be included:
- 18 years and older
- Men or women
- Carrying TTR mutation
- Having social insurance
- Given written informed consent after being informed of the purpose and potential risks
3.1.1.b. Exclusion criteria
Subjects with the following criteria will be excluded:
- Subject with a contraindication for MRI explorations
- Subject unable to understand the purpose and conditions of carrying out the study, unable to give consent
3.1.2. Healthy controls 3.1.2.a. Inclusion criteria
Subject must meet the following criteria to be included:
- 18 years and older
- Men or women
- Having social insurance
- Given written informed consent after being informed of the purpose and potential risks
3.1.2.b. Exclusion criteria
Subjects with the following criteria will be excluded:
- Subject with a contraindication for MRI explorations
- Subject unable to understand the purpose and conditions of carrying out the study, unable to give consent
Trial locations and contacts
1 site in 1 country.
France1 site
Assistance Publique Des Hopitaux de Marseille
Marseille, PACA, 13354
About this study
Official title: Expanding the Biomarkers in Familial Amyloid Neuropathy: Magnetic Resonance Imaging (MRI) and Motor Unit Estimation by Electrophysiological Study
Familial amyloid neuropathies (FAP) are hereditary disease due to a mutation of the tranthyretin gene (TTR). These neuropathies are severe and life frightening.
Asymptomatic carrier of TTR mutation are now detected in large TTR-FAP family. However, it is very hard to detect the moment where a TTR mutation carrier become symptomatic: too early diagnosis exposes the patients to side effect of the treatment and too late diagnosis exposes the patient to disease progression and clinical sequels.
Read more
Neurological monitoring comprises clinical examination, electrophysiology and imaging. Sensitivity and specificity of these tools are not sufficient and we have to develop new biomarkers sensitive enough to detect modifications under treatment and the moment where a TTR mutation carrier become symptomatic Magnetic resonance imaging (MRI) can well evaluate neuromuscular diseases. Electrophysiological examination is also a good tool to evaluate NAF. MUNIX is a technique that permits to estimate the number of motor unit in one muscl. MUNIX is related to the disability in chronic inflammatory neuropathies and could be more sensitive than clinical scales and other electrophysiological data to detect modification of the disease in TTR-FAP.
The objective of this exploratory study is to test the applicability of MUNIX and MRI as early measures for detecting the transition from asymptomatic to symptomatic TTR-FAP.
In symptomatic TTR-FAP we will determine if MUNIX and MRI data are related to clinical deficiency and disability of the patients.
This is a transversal exploratory study. If we manage to demonstrate that MRI and MUNIX can segregate symptomatic versus asymptomatic TTR mutation gene carriers, we will propose a longitudinal study with a follow up of more asymptomatic gene carriers.
Read the detailed description
Familial amyloid neuropathies (FAP) are hereditary disease due to a mutation of the tranthyretin gene (TTR). These neuropathies are severe and life frightening. Treatment is based on tafamidis and liver transplantation. Clinical trials of RNAI therapy are on-going. Treatment must be performed early to avoid clinical consequences.
Asymptomatic carrier of TTR mutation are now detected in large TTR-FAP family. Time of the beginning of the disease is quite variable among the patients and very difficult to predict. Penetrance is low and incomplete. It is estimated to be respectively 1.7% and 69% at the age of 30 and 90 years in the Swedish population. It is very hard to detect the moment where a TTR mutation carrier become symptomatic: too early diagnosis exposes the patients to side effect of the treatment and too late diagnosis exposes the patient to disease progression and clinical sequels.
Neurological monitoring comprises clinical examination, electrophysiology and imaging. Sensitivity and specificity of these tools are not sufficient and we have to develop new biomarkers sensitive enough to detect modifications under treatment and the moment where a TTR mutation carrier become symptomatic Magnetic resonance imaging (MRI) can well evaluate neuromuscular diseases. Nerve and muscle magnetization transfer are related to the disability in peripheral neuropathies. Specific MRI protocols permit to distinguish healthy control, asymptomatic carrier and symptomatic carrier of TTR mutation. In Kollmer et al study[9], high-resolution magnetic resonance neurography was applied at the thigh of 13 patients with symptomatic polyneuropathy and seven asymptomatic gene carriers. Quantification of mean proton spin density and T2 relaxation time was significantly different in symptomatic and asymptomatic TTR mutation gene carriers.
Electrophysiological examination is also a good tool to evaluate NAF. MUNIX is a technique that permits to estimate the number of motor unit in one muscle. MUNIX has been applied in large population of athletes and in chronic neurologic disorders as Amyotrophic Lateral Sclerosis (ALS) and inflammatory neuropathies. MUNIX is related to the disability in chronic inflammatory neuropathies, and It is more sensitive than clinical scales to detect the worsening of the disease in ALS. In TTR-FAP, the loss of motor unit is compensated by collateral sprouting of the terminal axons. Muscle weakness and muscle atrophy are delayed in the evolution of the disease and the involvement of the motor unit is not clinically detected in the early stage of the disease. We hypothesize that the variation of the MUNIX could be more sensitive than clinical scales and other electrophysiological data to detect modification of the disease in TTR-FAP.
The objective of this exploratory study is to test the applicability of MUNIX and MRI as early measures for detecting the transition from asymptomatic to symptomatic TTR-FAP.
In symptomatic TTR-FAP we will determine if MUNIX and MRI data are related to clinical deficiency and disability of the patients.
This is a transversal exploratory study. If we manage to demonstrate that MRI and MUNIX can segregate symptomatic versus asymptomatic TTR mutation gene carriers, we will propose a longitudinal study with a follow up of more asymptomatic gene carriers.
Will be included 10 healthy controls, and 15 TTR mutation gene carriers comprising 5 asymptomatic carriers and 10 symptomatic carriers. The sample size may look small, but it is similar to other published studies. Kollmer et al analysed magnetic resonance neurography in 13 symptomatic TTR-FAP and 7 asymptomatic gene carriers. In our study about MUNIX in inflammatory neuropathies, the analyse of 14 patients had enough statistical power to demonstrate that the MUNIX was related to the disability. Furthermore, TTR-FAP is a rare disease with a prevalence of 1 in 100 000, so we had to adapt the sample size is to an exploratory monocentric study. Furthermore, symptomatic TTR-FAP patients have frequently pace maker which prevent MRI assessment and will exclude patients from this study.
- Conditions
- Amyloid Neuropathies, Transthyretin Amyloidosis
- Being tested
- Electrophysiological biomarkers, MRI biomarkers
- Medical subject headings
- Amyloid Neuropathies, Amyloidosis, Hereditary, Transthyretin-Related
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Electrophysiological biomarkersOther
Motor and sensory nerve conduction study will be performed on median, ulnar, tibialis, peroneal and sural nerves.
MRI biomarkersOther
T1, T2, STIR and magnetisation transfer ratio (MTR) will be performed unilaterally on the thigh and the leg.
| Study group | Role | What they receive |
|---|---|---|
| healthy | Sham comparator | will be defined as persons without pathological mutation of the TTR gene Electrophysiological biomarkers and MRI biomarkers will be performed Receives: Other: Electrophysiological biomarkers; Other: MRI biomarkers |
| Asymptomatic carriers | Active comparator | will be defined as persons with a known pathological mutation of the TTR gene but with no clinical complain, normal clinical examination, and normal renal and cardiac investigations.
Electrophysiological biomarkers and MRI biomarkers will be performed Receives: Other: Electrophysiological biomarkers; Other: MRI biomarkers |
| Symptomatic carriers | Experimental | will be defined as persons with a known pathological mutation of the TTR gene with clinical complain, abnormal clinical examination, and abnormal renal and cardiac investigations.
Electrophysiological biomarkers and MRI biomarkers will be performed Receives: Other: Electrophysiological biomarkers; Other: MRI biomarkers |
What is being measured
The primary outcome is the main question the study is designed to answer.
MRI neurography
surface and diameter of the sciatic nerve will be measured on the T1-weighted sequence. Quantitative analyses will be performed using T2 and MTR sequences on the sciatic nerve at the middle of the thigh.
Measured: 1 hour
MUNIX
Supramaximal distal stimulations of the corresponding nerves will be performed to achieve maximal CMAP amplitude with minimum rise time and sharp negative take-off.
Measured: 30 minutes
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted17 Jul 2018
- Study start20 Sep 2018
- Primary completion18 Dec 2019
- Study completion18 Dec 2019
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Amyloid NeuropathiesStudies of the same condition, open and under way.
- More trials run by Assistance Publique Hopitaux De MarseilleThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Diagnosis
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Enrolment
- 60 participants (actual)
Sponsor and investigators
- Lead sponsor
- Assistance Publique Hopitaux De Marseille
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- EMILIE GARRIDO PRADALIE, Study director, APHM
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03588468
- Sponsor's protocol ID
- 2017-37
- Status last verified
- Oct 2022
- First submitted
- 4 Jul 2018
- Last updated
- 8 May 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Publications
Durelle C, Delmont E, Michel C, Trabelsi A, Hostin MA, Ogier A, Bendahan D, Attarian S. Quantification of muscle involvement in familial amyloid polyneuropathy using MRI. Eur J Neurol. 2023 Oct;30(10):3286-3295. doi: 10.1111/ene.15970. Epub 2023 Jul 23.
PubMed 37422895
Study at a glance
From the registry record, last updated by the sponsor on 8 May 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Expanding the Biomarkers in Familial Amyloid Neuropathy: Magnetic Resonance Imaging (MRI) and Motor Unit Estimation by Electrophysiological Study
- ClinicalTrials.gov ID
- NCT03588468
- Acronym / sponsor ID
- 2017-37
- Conditions
- Amyloid Neuropathies, Transthyretin Amyloidosis
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 60 participants (actual)
- Lead sponsor
- Assistance Publique Hopitaux De MarseilleUniversity, hospital or other
- Study start
- 20 Sep 2018 (actual)
- Primary completion
- 18 Dec 2019 (actual)
- Study completion
- 18 Dec 2019 (actual)
- First posted
- 17 Jul 2018 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Familial amyloid neuropathies (FAP) are hereditary disease due to a mutation of the tranthyretin gene (TTR). These neuropathies are severe and life frightening.
Asymptomatic carrier of TTR mutation are now detected in large TTR-FAP family. However, it is very hard to detect the moment where a TTR mutation carrier become symptomatic: too early diagnosis exposes the patients to side effect of the treatment and too late diagnosis exposes the patient to disease progression and clinical sequels.
Neurological monitoring comprises clinical examination, electrophysiology and imaging. Sensitivity and specificity of these tools are not sufficient and we have to develop new biomarkers sensitive enough to detect modifications under treatment and the moment where a TTR mutation carrier become symptomatic Magnetic resonance imaging (MRI) can well evaluate neuromuscular diseases. Electrophysiological examination is also a good tool to evaluate NAF. MUNIX is a technique that permits to estimate the number of motor unit in one muscl. MUNIX is related to the disability in chronic inflammatory neuropathies and could be more sensitive than clinical scales and other electrophysiological data to detect modification of the disease in TTR-FAP.
The objective of this exploratory study is to test the applicability of MUNIX and MRI as early measures for detecting the transition from asymptomatic to symptomatic TTR-FAP.
In symptomatic TTR-FAP we will determine if MUNIX and MRI data are related to clinical deficiency and disability of the patients.
This is a transversal exploratory study. If we manage to demonstrate that MRI and MUNIX can segregate symptomatic versus asymptomatic TTR mutation gene carriers, we will propose a longitudinal study with a follow up of more asymptomatic gene carriers.
Detailed description
Familial amyloid neuropathies (FAP) are hereditary disease due to a mutation of the tranthyretin gene (TTR). These neuropathies are severe and life frightening. Treatment is based on tafamidis and liver transplantation. Clinical trials of RNAI therapy are on-going. Treatment must be performed early to avoid clinical consequences.
Asymptomatic carrier of TTR mutation are now detected in large TTR-FAP family. Time of the beginning of the disease is quite variable among the patients and very difficult to predict. Penetrance is low and incomplete. It is estimated to be respectively 1.7% and 69% at the age of 30 and 90 years in the Swedish population. It is very hard to detect the moment where a TTR mutation carrier become symptomatic: too early diagnosis exposes the patients to side effect of the treatment and too late diagnosis exposes the patient to disease progression and clinical sequels.
Neurological monitoring comprises clinical examination, electrophysiology and imaging. Sensitivity and specificity of these tools are not sufficient and we have to develop new biomarkers sensitive enough to detect modifications under treatment and the moment where a TTR mutation carrier become symptomatic Magnetic resonance imaging (MRI) can well evaluate neuromuscular diseases. Nerve and muscle magnetization transfer are related to the disability in peripheral neuropathies. Specific MRI protocols permit to distinguish healthy control, asymptomatic carrier and symptomatic carrier of TTR mutation. In Kollmer et al study[9], high-resolution magnetic resonance neurography was applied at the thigh of 13 patients with symptomatic polyneuropathy and seven asymptomatic gene carriers. Quantification of mean proton spin density and T2 relaxation time was significantly different in symptomatic and asymptomatic TTR mutation gene carriers.
Electrophysiological examination is also a good tool to evaluate NAF. MUNIX is a technique that permits to estimate the number of motor unit in one muscle. MUNIX has been applied in large population of athletes and in chronic neurologic disorders as Amyotrophic Lateral Sclerosis (ALS) and inflammatory neuropathies. MUNIX is related to the disability in chronic inflammatory neuropathies, and It is more sensitive than clinical scales to detect the worsening of the disease in ALS. In TTR-FAP, the loss of motor unit is compensated by collateral sprouting of the terminal axons. Muscle weakness and muscle atrophy are delayed in the evolution of the disease and the involvement of the motor unit is not clinically detected in the early stage of the disease. We hypothesize that the variation of the MUNIX could be more sensitive than clinical scales and other electrophysiological data to detect modification of the disease in TTR-FAP.
The objective of this exploratory study is to test the applicability of MUNIX and MRI as early measures for detecting the transition from asymptomatic to symptomatic TTR-FAP.
In symptomatic TTR-FAP we will determine if MUNIX and MRI data are related to clinical deficiency and disability of the patients.
This is a transversal exploratory study. If we manage to demonstrate that MRI and MUNIX can segregate symptomatic versus asymptomatic TTR mutation gene carriers, we will propose a longitudinal study with a follow up of more asymptomatic gene carriers.
Will be included 10 healthy controls, and 15 TTR mutation gene carriers comprising 5 asymptomatic carriers and 10 symptomatic carriers. The sample size may look small, but it is similar to other published studies. Kollmer et al analysed magnetic resonance neurography in 13 symptomatic TTR-FAP and 7 asymptomatic gene carriers. In our study about MUNIX in inflammatory neuropathies, the analyse of 14 patients had enough statistical power to demonstrate that the MUNIX was related to the disability. Furthermore, TTR-FAP is a rare disease with a prevalence of 1 in 100 000, so we had to adapt the sample size is to an exploratory monocentric study. Furthermore, symptomatic TTR-FAP patients have frequently pace maker which prevent MRI assessment and will exclude patients from this study.
Study design
- Primary purpose
- Diagnosis
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| healthy | Sham comparator | Other: Electrophysiological biomarkers, Other: MRI biomarkerswill be defined as persons without pathological mutation of the TTR gene Electrophysiological biomarkers and MRI biomarkers will be performed |
| Asymptomatic carriers | Active comparator | Other: Electrophysiological biomarkers, Other: MRI biomarkerswill be defined as persons with a known pathological mutation of the TTR gene but with no clinical complain, normal clinical examination, and normal renal and cardiac investigations. Electrophysiological biomarkers and MRI biomarkers will be performed |
| Symptomatic carriers | Experimental | Other: Electrophysiological biomarkers, Other: MRI biomarkerswill be defined as persons with a known pathological mutation of the TTR gene with clinical complain, abnormal clinical examination, and abnormal renal and cardiac investigations. Electrophysiological biomarkers and MRI biomarkers will be performed |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Electrophysiological biomarkersMotor and sensory nerve conduction study will be performed on median, ulnar, tibialis, peroneal and sural nerves. | Other | Asymptomatic carriers, Symptomatic carriers, healthy |
| MRI biomarkersT1, T2, STIR and magnetisation transfer ratio (MTR) will be performed unilaterally on the thigh and the leg. | Other | Asymptomatic carriers, Symptomatic carriers, healthy |
Primary outcome
MRI neurography
Time frame: 1 hour
surface and diameter of the sciatic nerve will be measured on the T1-weighted sequence. Quantitative analyses will be performed using T2 and MTR sequences on the sciatic nerve at the middle of the thigh.
MUNIX
Time frame: 30 minutes
Supramaximal distal stimulations of the corresponding nerves will be performed to achieve maximal CMAP amplitude with minimum rise time and sharp negative take-off.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 8 May 2026.
- Results publication: PubMed 37422895Durelle C, Delmont E, Michel C, Trabelsi A, Hostin MA, Ogier A, Bendahan D, Attarian S. Quantification of muscle involvement in familial amyloid polyneuropathy using MRI. Eur J Neurol. 2023 Oct;30(10):3286-3295. doi: 10.1111/ene.15970. Epub 2023 Jul 23.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
EMILIE GARRIDO PRADALIE study director
APHM
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Electrophysiological biomarkers and MRI biomarkers in people with Amyloid Neuropathies and Transthyretin Amyloidosis, run by Assistance Publique Hopitaux De Marseille at 1 site in France.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 8 May 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in France. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. Some participants in this study may receive a placebo. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
MRI neurography (time frame: 1 hour). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT03588468, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 8 May 2026.