Renal and Vascular Phenotypic Characterization of Patients With Enamel Renal Syndrome Due to a Pathogenic Variant of the FAM20A Gene and Pathophysiological Study of Ectopic Calcifications

NCT ID: NCT07285421

Last Updated: 2025-12-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

NOT_YET_RECRUITING

Clinical Phase

NA

Total Enrollment

30 participants

Study Classification

INTERVENTIONAL

Study Start Date

2026-01-01

Study Completion Date

2029-10-30

Brief Summary

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In the research, the investigators will characterize the renal and vascular damage and look for factors favoring the formation of calcification induced by enamel renal syndrome.

Patients will undergo four investigations, as part of their routine care, to assess their renal impairment. Each investigation will require a day in the Physiology Department of the George Pompidou European Hospital.

The 4 tests are designed to

* precisely measure your renal filtration capacity,
* evaluate your body's calcium and phosphate regulation,
* evaluate your capacity to regulate the elimination of water from the body
* assess your body's ability to regulate "acid" intake. As part of the research, an additional 20 ml blood sample and a urine sample will be taken during the other samples taken as part of routine care.

Healthy volunteers will undergo blood and urine tests, dental X-rays and renal ultrasound. For healthy volunteers, the aim of the dental X-ray and renal ultrasound is to check that there are no dental or renal abnormalities, so as to rule out not only email-rein syndrome, but also any dental or renal abnormalities that might resemble it. The aim of blood and urine sampling is to measure various molecules that promote calcification or inhibit the calcification process, so as to be able to compare results obtained in healthy subjects with those obtained in patients with enamel renal syndrome. Each healthy subject will be selected to be matched by age and sex to each of the patients included in the study.

Detailed Description

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Conditions

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Enamel Renal Syndrome

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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Healthy volunteers

The control group will be made up of healthy volunteers, in order to provide a reference population, matched for the analyses carried out as part of the research, i.e. metabolome, proteome and plasma factors of mineralization.

Group Type OTHER

urinary proteome

Intervention Type DIAGNOSTIC_TEST

Volume 2 ml, with protease inhibitor made one time for each arm of the protocol

urinary metabolome

Intervention Type DIAGNOSTIC_TEST

Sample collected once in the protocol for each arm.

Evaluation of plasma mineralization factors

Intervention Type DIAGNOSTIC_TEST

Complementary plasma analysis during another blood sample collection for both arms

Renal ultrasound

Intervention Type DIAGNOSTIC_TEST

Verification of normal renal morphology, absence of nephrocalcinosis

dental panoramic x-ray

Intervention Type RADIATION

Verification of normal dentition

Blood and urine minimal biology

Intervention Type BIOLOGICAL

Fasting blood: creatinine, blood ions (Na + K + Cl + CO2 + Proteins), calcium, phosphate, CBC (Complete Blood Count), liver function tests, lipid profile); Morning fasting urine: creatinine, calcium, phosphate, protein, urinalysis (ECBU)

Enamel Renal Syndrome Patient

The population to be studied is a population of adult patients suffering from enamel renal syndrome with FAM20A mutation.

Group Type EXPERIMENTAL

urinary proteome

Intervention Type DIAGNOSTIC_TEST

Volume 2 ml, with protease inhibitor made one time for each arm of the protocol

urinary metabolome

Intervention Type DIAGNOSTIC_TEST

Sample collected once in the protocol for each arm.

Evaluation of plasma mineralization factors

Intervention Type DIAGNOSTIC_TEST

Complementary plasma analysis during another blood sample collection for both arms

Interventions

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urinary proteome

Volume 2 ml, with protease inhibitor made one time for each arm of the protocol

Intervention Type DIAGNOSTIC_TEST

urinary metabolome

Sample collected once in the protocol for each arm.

Intervention Type DIAGNOSTIC_TEST

Evaluation of plasma mineralization factors

Complementary plasma analysis during another blood sample collection for both arms

Intervention Type DIAGNOSTIC_TEST

Renal ultrasound

Verification of normal renal morphology, absence of nephrocalcinosis

Intervention Type DIAGNOSTIC_TEST

dental panoramic x-ray

Verification of normal dentition

Intervention Type RADIATION

Blood and urine minimal biology

Fasting blood: creatinine, blood ions (Na + K + Cl + CO2 + Proteins), calcium, phosphate, CBC (Complete Blood Count), liver function tests, lipid profile); Morning fasting urine: creatinine, calcium, phosphate, protein, urinalysis (ECBU)

Intervention Type BIOLOGICAL

Other Intervention Names

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Propensity score Osteoprotegerin dp-uc MGP Fetuin A

Eligibility Criteria

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Inclusion Criteria

* Informed patient who does not object to participating in the study
* Age ≥ 18 years
* Be affiliated to a social security scheme or be a beneficiary of such a scheme
* Able to understand the interest and constraints of the study
* Suffering from enamel-renal syndrome with a proven pathogenic variant of FAM20A

Exclusion Criteria

* Pregnancy
* Breast-feeding
* Simultaneous participation in a therapeutic trial
* Patient under guardianship or curatorship
* Patient under court protection or family guardianship
* Patient under AME
* Enamel-renal syndrome with pathogenic variation in a gene other than FAM20A
Minimum Eligible Age

18 Years

Maximum Eligible Age

90 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Fondation Université de Paris

UNKNOWN

Sponsor Role collaborator

Université de Liège

OTHER

Sponsor Role collaborator

Institut Necker Enfants Malades

OTHER

Sponsor Role collaborator

Assistance Publique - Hôpitaux de Paris

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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HEGP - clinical investigation center

Paris, , France

Site Status

HEGP - physiology department

Paris, , France

Site Status

Countries

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France

Central Contacts

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Cléo Bourgeois

Role: CONTACT

0156095638 ext. +33

Elise Bouderlique, MD

Role: CONTACT

0156092866 ext. +33

Facility Contacts

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Marine Livrozet

Role: primary

0156095854

Elise Bouderlique

Role: primary

0156092866 ext. +33

Other Identifiers

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2024-A02589-38

Identifier Type: OTHER

Identifier Source: secondary_id

24.05810.000413

Identifier Type: OTHER

Identifier Source: secondary_id

APHP240692

Identifier Type: -

Identifier Source: org_study_id