HSPronostic - Physiopathology and Prognostic Biomarkers for Henoch-Schönlein Purpura

Head :
Monteiro Renato, Unité U699 - Equipe « Immunorécepteurs et Immunopathologie rénale »
Pillebout Evangéline

Last update : 07/03/2014 | Version : 1 | ID : 5243

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Physiopathology and Prognostic Biomarkers for Henoch-Schönlein Purpura
Sign or acronym HSPronostic
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL DR-2011-494
General Aspects
Medical area Immunology
Internal medicine
Rare diseases
Urology, andrology and nephrology
Health determinants Genetic
Others (details) Henoch-Schönlein purpura
Keywords Henoch-Schönlein purpura, physiopathological markers, prognostic markers, renal impairment, phenotype, diagnosis
Scientific investigator(s) (Contact)
Name of the director Monteiro
Surname Renato
Address INSERM U699, Faculté Bichat, 16 rue Henri Huchard, 75018 Paris
Phone + 33 (0)1 57 27 77 51
Email Renato.monteiro@inserm.fr
Unit Unité U699 - Equipe « Immunorécepteurs et Immunopathologie
rénale »
Organization INSERM - Institut National de la Santé et de la Recherche
Name of the director Pillebout
Surname Evangéline
Address Néphrologie, Hôiptal St Louis, 1 av Claude Vellefaux, 75010 Paris
Phone + 33 (0)1 42 49 96 05
Email evangeline.pillebout@sls.aphp.fr
Organization APHP
Collaborations
Funding
Funding status Public
Details Inserm/DGOS (direction générale de l'offre de soins)
Governance of the database
Sponsor(s) or organisation(s) responsible INSERM - Institut National de la Santé et de la Recherche Médicale
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Cohort study
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Recruitment by physicians from the following services: paediatrics and adult services, emergency services, internal medicine, dermatology and nephrology.
Database objective
Main objective To evaluate the biological profile of patients with skin Henoch-Schönlein purpura according to the presence or absence of renal impairment. To identify specific genetic susceptibility and biomarkers that can predict poor renal impairment prognosis at 1 year.
Inclusion criteria Patients with Henoch-Schönlein purpura confirmed by skin lesions
Population type
Age Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area France
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2011
Date of last collection (YYYY or MM/YYYY) 2013
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 120
Data
Database activity Current data collection
Type of data collected Clinical data
Paraclinical data
Biological data
Clinical data (detail) Direct physical measures
Medical registration
Paraclinical data (detail) Skin and renal biopsy
Biological data (detail) At J0 and M12, creatinine, proteinuria rate, urinary sediment, FBC
Presence of a biobank Yes
Contents of biobank Serum
Plasma
Fluids (saliva, urine, amniotic fluid, …)
DNA
Details of biobank content DNA bank, cell bank, serum bank
Health parameters studied Health event/morbidity
Health event/mortality
Procedures
Data collection method Anonymised clinical record completed by recruiting physician
Participant monitoring Yes
Details on monitoring of participants At least to one-year. Proposal of up to 3 years.
Links to administrative sources No
Promotion and access
Promotion
Access
Terms of data access (charter for data provision, format of data, availability delay) Publications
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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