NCT01992666

Brief Summary

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease for which the aetiology includes genet-ic and environmental factors. It is rare in children as compared to adults. The severity may be related to greater involvement of genetic factors in children. The impact of genetics in the development of SLE is important, and the risk of recurrence in siblings evaluated by lambda S ratio is 30 in SLE, while it is 15 for type-1 diabetes and 8 rheumatoid arthritis, thereby indicating high impact of genetics in SLE. Recently, the group of Professor Yanick Crow in Manchester and other teams has identified new forms of lupus Mendelian genetics. The TREX1 and genes involved in the SAMHD1 frostbite lupus. Nearly 2 % of all adult subjects with SLE have a heterozygous mutation in the TREX1 gene, which therefore represents the first genetic cause of SLE. The team of Professor Crow also identified the ACP5 gene that is responsible for SLE associated with Spondylo-epiphyseal enchondro-epiphyseal dysplasia (syndromic lupus). Other groups have identified mutations in two genes encoding a DNAse (DNAse1 and DNAse1L3) responsible for familial monogenic forms of SLE. These new genes SLE were identified through research of germ-line mutations in cases of lupus syndromic or family. In collaboration with Professor Crow, we are currently undergoing characterization of a novel gene of SLE in a family and we have identified a second locus identified in another family. The identification of these genes provides a better understanding of the mechanisms regulating immune tolerance in humans. The frequency of these genetic forms is not known. There is very little data on the immunological phenotype of these patients. This is a clinical study to investigate the genetic and immunological abnormalities associated with pediatric SLE. The aim are to:

  • study the genetics of pediatric SLE (or syndromic or family) and to search for mutations in the known genetic lupus or new genes in collaboration with Professor Yanick Crow.
  • study the lymphocyte subpopulations and serum cytokines in pediatric patients with SLE (or syndromic or family) in the large Rhône- Alpes- Auvergne area.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
271

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started Oct 2013

Typical duration for not_applicable

Geographic Reach
1 country

26 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

October 1, 2013

Completed
1 month until next milestone

First Submitted

Initial submission to the registry

November 8, 2013

Completed
17 days until next milestone

First Posted

Study publicly available on registry

November 25, 2013

Completed
2.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 1, 2016

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 1, 2016

Completed
Last Updated

December 19, 2025

Status Verified

December 1, 2025

Enrollment Period

3 years

First QC Date

November 8, 2013

Last Update Submit

December 13, 2025

Conditions

Keywords

Systemic lupus erythematosusgeneticimmunologicalpediatricmutationlupus

Outcome Measures

Primary Outcomes (1)

  • New genes identification

    Description: Identification of genetic mutations in the following genes: TREX1, SAMHD1, ACP5, DNAse1, DNAse1L3, or in new lupus genes.

    Once. At inclusion.

Secondary Outcomes (1)

  • Immunological genotype and clinical abnormalities correlation

    Once. At inclusion

Other Outcomes (2)

  • Immunological component

    Once. At inclusion

  • Characterization of sub-groups: size, articular manifestations (SLEDAI), hematology (hemoglobin, platelets, G White, ANA, ds-DNA, C3, C4, CH50, creatinine, proteinuria.

    Once. At inclusion

Study Arms (1)

Blood sampling

EXPERIMENTAL
Genetic: Blood sampling

Interventions

Immunologic and genetic analysis from a single blood sample.

Blood sampling

Eligibility Criteria

Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Male or female subject, major or minor of any age with SLE (defined according to the ACR criteria)
  • Onset pediatric (\<18 years) OR
  • Syndromic Lupus (associated with growth retardation, neurological deficit not related to lupus, frostbite, lymphoproliferation, the kidney malformations, heart, lung, brain calcifications) OR
  • Lupus in context with familial consanguinity OR
  • Familial cases (2 cases of SLE related first degree relative) OR related topic of the first degree to a lupus patient participant (if family lupus or related parents) OR
  • mother/father's lupus patient (in cas of simplex lupus)
  • A person or beneficiary entitled to a social security scheme or similar
  • Informed consent signed by the person (or parent / holding parental authority for minors)

You may not qualify if:

  • \- none

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (26)

Service d'hématologie / oncologie pédiatrique - CHU

Angers, France

Location

Néphrologie Pédiatrique - CHU Besançon

Besançon, France

Location

Hôpital Femme Mère Enfant

Bron, France

Location

Service de Néphrologie Pédiatrique

Clermont-Ferrand, France

Location

Service de pédiatrie - CHU Fort de France

Fort de France, France

Location

Service de Néphrologie et Rhumatologie Pédiatrique

Grenoble, France

Location

Service de Rhumatologie Pédiatrique - Hôpital de Bicêtre

Le Kremlin-Bicêtre, France

Location

Service de médecine interne - Centre de référence des maladies rares

Lille, France

Location

Service de néphrologie, endocrinologie, maladie métabolique et hématologie bénigne pédiatriques - Hôpital Jeanne de Flandre

Lille, France

Location

édiatrie générale, urgences et maladies infectieuses, Hôpital Salengro

Lille, France

Location

Service de Néphrologie - Hôpital Edouard Herriot

Lyon, France

Location

Centre de néphrologie et de transplantation rénale - Hôpital de la conception

Marseille, France

Location

Service de médecine infantile- Hôpital Nord

Marseille, France

Location

Service de médecine interne - Hôpitaux privés de Metz

Metz, France

Location

ervice d'urgence et post-urgences pédiatriques - CHU Arnaud de Villeneuve

Montpellier, France

Location

Service médecine infantile 2

Nancy, France

Location

Service de néphrologie pédiatrique - CHU de Nantes

Nantes, France

Location

Service d'immunologie et rhumatologie pédiatrique - Centre de référence de maladies rhumatologiques et inflammatoires rares en pédiatrie-Hôpital Necker-Enfants malades

Paris, France

Location

Service de médecine interne - Hôpital Saint Antoine

Paris, France

Location

Service de pédiatrie générale - Hôpital Robert-Debré

Paris, France

Location

Médecine Interne Adulte - Centre Hospitalier Lyon Sud

Pierre-Bénite, 69495, France

Location

Service de Rhumatologie - Centre Hospitalier Lyon Sud

Pierre-Bénite, France

Location

Service pédiatrie grands enfants-adolescents - CHU Hôpital Sud

Rennes, France

Location

Hôpital Nord

Saint-Etienne, France

Location

Service de Pédiatrie Générale - CHU Réunion

Saint-Pierre, France

Location

Service de néphrologie - médecine interne - Hypertension pédiatrique - Hôpital des enfants

Toulouse, France

Location

Related Publications (1)

  • Weill O, Decramer S, Malcus C, Kassai B, Rouvet I, Ginhoux T, Crow YJ, Rieux-Laucat F, Soulas-Sprauel P, Pagnier A, Kone-Paut I, Piram M, Galeotti C, Samaille C, Reumaux H, Lanteri A, Dubois SM, Lefebvre H, Burtey S, Maurier F, Carbasse A, Lemelle I, Meinzer U, Despert V, Flodrops H, Fabien N, Ranchin B, Hachulla E, Bader-Meunier B, Belot A. Familial and syndromic lupus share the same phenotype as other early-onset forms of lupus. Joint Bone Spine. 2017 Oct;84(5):589-593. doi: 10.1016/j.jbspin.2016.12.008. Epub 2016 Dec 28.

MeSH Terms

Conditions

Lupus Erythematosus, Systemic

Interventions

Blood Specimen Collection

Condition Hierarchy (Ancestors)

Connective Tissue DiseasesSkin and Connective Tissue DiseasesAutoimmune DiseasesImmune System Diseases

Intervention Hierarchy (Ancestors)

Specimen HandlingClinical Laboratory TechniquesDiagnostic Techniques and ProceduresDiagnosisPuncturesSurgical Procedures, OperativeInvestigative Techniques

Study Officials

  • Alexandre Belot, Dr

    Hospices Civils de Lyon

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NA
Masking
NONE
Purpose
OTHER
Intervention Model
SINGLE GROUP
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

November 8, 2013

First Posted

November 25, 2013

Study Start

October 1, 2013

Primary Completion

October 1, 2016

Study Completion

October 1, 2016

Last Updated

December 19, 2025

Record last verified: 2025-12

Locations