Fanconi AnemiaMicroFancIINCT04656171
Microcephaly, Fanconi Anemia and Praxial Disorders
A study testing MRI of the hand and forearm, in people with Fanconi Anemia, run by Assistance Publique - Hôpitaux de Paris at 1 site in France.
Trial summary
Fanconi Anemia (FA) is mentioned in children with congenital malformations including kidney, hart and skeletal malformations (absence or abnormal thumb or forearm), and bone marrow failure or myelodysplasia with a progressive onset in childhood or adulthood. Read more about this study
- Who is it for?
- Ages 5 to 21 years
- Conditions the study is for
- Fanconi Anemia
- What is being tested?
- MRI of the hand and forearm,
- Type of treatment
- Surgery or procedure
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 0 participants
- Where
- 1 siteFrance
- Study dates
- 30 Jan 2023to 30 Jan 2023
- 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 5 to 21 years
- All sexes
- No healthy volunteers
- Child, Adult
Who may be able to join
- Patients with Fanconi Anemia defined according to two of the following diagnostic criteria already included in the MicroFanc study:
- Chromosome breakage test after exposure to an alkylating agent (mitomycin) on peripheral blood lymphocytes.
- FancD2 test on lymphocytes or fibroblasts
- sensitivity of fibroblasts to mitomycin
- mutation in one of the FANC complementation genes (A, B, C, D1, D2, E, F, G, I, J, L, M, N)
- Non-transplanted patients or patients at a distance from CSH transplant (>3 years)
- Age ≥5 years of age at inclusion (minimum age of accessibility for neuropsychological tests and no need for sedation for MRI)
Who cannot join
- Subjects for whom both parents have not agreed to participate in the research, or for whom MRI is contraindicated.
Trial locations and contacts
1 site in 1 country.
About this study
Fanconi Anemia (FA) is mentioned in children with congenital malformations including kidney, hart and skeletal malformations (absence or abnormal thumb or forearm), and bone marrow failure or myelodysplasia with a progressive onset in childhood or adulthood. No study has focused on microcephaly, a reduction in brain volume, which is present in 20% of children, and its consequences on cognitive and structural level of the brain. Since 2014, Robert-Debré's team has been interested in this functional cognitive and neuroanatomical approach trough a National PHRC. Preliminary results carried out on 12 children show that their intellectual efficiency was in the normal range for age. However, we noticed a significant difference between abilities in comprehension and verbal reasoning corresponding to what is expected for age, and the sensorimotor skills or fine motor praxia significantly reduced. These difficulties, graphically penalizing for these children, are not always explained by a skeletal malformation of the upper limb, suggesting that musculo-tendinous anomalies may be associated. The objectives of our project are: 1) to identify upper limb musculo-tendinous abnormalities and their functional consequences, 2) to determine if these abnormalities could influence the somatosensory representation of the upper limb at the cerebral cortical level. This project should help us to better understand the fine motor disabilities or developmental coordination disorder of these children, which penalize their learning, and provide them with adapted solutions.
Read the detailed description
Our hypothesis is that children with FA present a developmental dyspraxia. This condition is very penalizing for children especially regarding graphic tasks, handwriting, whether or not they have skeletal malformations of the upper limbs. Consequences are fatigue because of energy expended trying to execute fine motor movements correctly.
Main objective:
To identify gesture dyspraxia in order to propose a targeted rehabilitation leading to national recommendations.
Main Evaluation Criteria :
- measurement of fine motor praxia
- quantification of dyspraxia
Secondary Objectives :
To identify the musculoskeletal or tendinous anomalies in the upper limbs of AF children and to assess their functional consequences.
To determine if these upper limbs abnormalities could influence the somatosensory map of this part of the body in the cerebral cortex.
Secondary Evaluation Criteria :
- MRI of the hand and forearm, orthopedic examination and functional assessment
- Previously obtained brain MRI data
- Conditions
- Fanconi Anemia
- Being tested
- MRI of the hand and forearm,
- Medical subject headings
- Fanconi Anemia
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
MRI of the hand and forearm,Radiation
MRI of the hand and forearm,
| Study group | Role | What they receive |
|---|---|---|
| Minor patients with Fanconi anemia | Experimental | MRI of hands and forearm, neuropsychological and neuromotor tests Receives: Radiation: MRI of the hand and forearm, |
| Minor controls | Active comparator | MRI of the hand and forearm, orthopedic evaluation, neuromotor tests of the upper limbs, praxies evaluation, neurocognitive evaluation Receives: Radiation: MRI of the hand and forearm, |
What is being measured
The primary outcome is the main question the study is designed to answer.
measurement of fine motor praxia
Measured: 24 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted7 Dec 2020
- Study start30 Jan 2023
- Primary completion30 Jan 2023
- Study completion30 Jan 2023
Why it stopped: No financement AFAM
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Fanconi AnemiaStudies of the same condition, open and under way.
- More trials run by Assistance Publique - Hôpitaux de ParisThe 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
- Other
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Enrolment
- 0 participants (actual)
Sponsor and investigators
- Lead sponsor
- Assistance Publique - Hôpitaux de Paris
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Sandrine Passemard, MD, Principal investigator, Assistance Publique - Hôpitaux de Paris
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04656171
- Sponsor's protocol ID
- APHP200090
- Other IDs
- N° IDRCB: 2019-A03171-56
- Acronym
- MicroFancII
- Status last verified
- Jan 2023
- First submitted
- 5 Nov 2020
- Last updated
- 3 Feb 2023
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 3 Feb 2023. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Microcephaly, Fanconi Anemia and Praxial Disorders
- ClinicalTrials.gov ID
- NCT04656171
- Acronym / sponsor ID
- MicroFancII / APHP200090
- Conditions
- Fanconi Anemia
- Study type
- Interventional
- Recruitment status
- WithdrawnReason stopped: No financement AFAM
- Enrolment
- 0 participants (actual)
- Lead sponsor
- Assistance Publique - Hôpitaux de ParisUniversity, hospital or other
- Study start
- 30 Jan 2023 (actual)
- Primary completion
- 30 Jan 2023 (actual)
- Study completion
- 30 Jan 2023 (actual)
- First posted
- 7 Dec 2020 (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.
Fanconi Anemia (FA) is mentioned in children with congenital malformations including kidney, hart and skeletal malformations (absence or abnormal thumb or forearm), and bone marrow failure or myelodysplasia with a progressive onset in childhood or adulthood. No study has focused on microcephaly, a reduction in brain volume, which is present in 20% of children, and its consequences on cognitive and structural level of the brain. Since 2014, Robert-Debré's team has been interested in this functional cognitive and neuroanatomical approach trough a National PHRC. Preliminary results carried out on 12 children show that their intellectual efficiency was in the normal range for age. However, we noticed a significant difference between abilities in comprehension and verbal reasoning corresponding to what is expected for age, and the sensorimotor skills or fine motor praxia significantly reduced. These difficulties, graphically penalizing for these children, are not always explained by a skeletal malformation of the upper limb, suggesting that musculo-tendinous anomalies may be associated. The objectives of our project are: 1) to identify upper limb musculo-tendinous abnormalities and their functional consequences, 2) to determine if these abnormalities could influence the somatosensory representation of the upper limb at the cerebral cortical level. This project should help us to better understand the fine motor disabilities or developmental coordination disorder of these children, which penalize their learning, and provide them with adapted solutions.
Detailed description
Our hypothesis is that children with FA present a developmental dyspraxia. This condition is very penalizing for children especially regarding graphic tasks, handwriting, whether or not they have skeletal malformations of the upper limbs. Consequences are fatigue because of energy expended trying to execute fine motor movements correctly.
Main objective:
To identify gesture dyspraxia in order to propose a targeted rehabilitation leading to national recommendations.
Main Evaluation Criteria :
- measurement of fine motor praxia
- quantification of dyspraxia
Secondary Objectives :
To identify the musculoskeletal or tendinous anomalies in the upper limbs of AF children and to assess their functional consequences.
To determine if these upper limbs abnormalities could influence the somatosensory map of this part of the body in the cerebral cortex.
Secondary Evaluation Criteria :
- MRI of the hand and forearm, orthopedic examination and functional assessment
- Previously obtained brain MRI data
Study design
- Primary purpose
- Other
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Minor patients with Fanconi anemia | Experimental | Radiation: MRI of the hand and forearm,MRI of hands and forearm, neuropsychological and neuromotor tests |
| Minor controls | Active comparator | Radiation: MRI of the hand and forearm,MRI of the hand and forearm, orthopedic evaluation, neuromotor tests of the upper limbs, praxies evaluation, neurocognitive evaluation |
Who may qualify
- Ages
- 5 to 21 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
Key inclusion criteria (7 listed)
- Patients with Fanconi Anemia defined according to two of the following diagnostic criteria already included in the MicroFanc study:
- Non-transplanted patients or patients at a distance from CSH transplant (>3 years)
- Age ≥5 years of age at inclusion (minimum age of accessibility for neuropsychological tests and no need for sedation for MRI)
Key exclusion criteria (1 listed)
- Subjects for whom both parents have not agreed to participate in the research, or for whom MRI is contraindicated.
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 |
|---|---|---|
| MRI of the hand and forearm,MRI of the hand and forearm, | Radiation | Minor controls, Minor patients with Fanconi anemia |
Primary outcome
measurement of fine motor praxia
Time frame: 24 months
Results and safety
The study was withdrawn before enrolling participants, so there are no results.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 3 Feb 2023.
- Individual participant dataSharing planned: No
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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.
Sandrine Passemard, MD principal investigator
Assistance Publique - Hôpitaux de Paris
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing MRI of the hand and forearm, in people with Fanconi Anemia, run by Assistance Publique - Hôpitaux de Paris 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?
The sponsor lists 7 inclusion and 1 exclusion criteria. 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: withdrawn, as of the sponsor's last update on 3 Feb 2023. 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. 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 was withdrawn before enrolling participants, so there are no results.
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?
measurement of fine motor praxia (time frame: 24 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
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 3 Feb 2023.