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