ITMO public health
Last update : 10/02/2015 | Version : 2 | ID : 5623
| General | |
| Identification | |
| Detailed name | Epidemiology Network and Nephrology Information Registry (qualified registry 2012-2015) |
| Sign or acronym | REIN |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 903188 |
| General Aspects | |
| Medical area |
Urology, andrology and nephrology |
| Keywords | Data, interpretation, decision, epidemiological expertise, biostatistics, transplanted or dialysis patients, rate of mortality and progression, comorbidities, associated disabilities, incidence, prevalence, sociodemographic characteristics, support |
| Scientific investigator(s) (Contact) | |
| Name of the director | Jacquelinet |
| Surname | Christian |
| Address | Direction Médicale et Scientifique, Agence de la biomédecine, 1 avenue du stade de France, 93212 La Plaine Saint-Denis Cedex |
| Phone | + 33 (0)1 55 93 69 55 |
| christian.jacquelinet@biomedecine.fr | |
| Unit | Direction Médicale et Scientifique |
| Organization | Agence de |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Comité National des Registres |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Agence de Biomédecine |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. | Selection of subjects that meet the required inclusion criteria. Internal and external data system controls are necessary in order to verify that all eligible cases have been declared and identified. Dialysis units or centres refer all patients with chronic renal disease treated by their team whether the patient is residing in the region or not. Completeness is assessed by all regional centres or units. |
| Database objective | |
| Main objective | To establish a sustainable information system by unifying data, its interpretation and potential use for public health decision-making or clinical practice for all partners involved (network organisation) and to organise epidemiological knowledge, biostatistics and data necessary to: - Estimate the number of dialysis or transplant patients for chronic renal disease in France and overseas territories, - Assess the impact (Objective 80 of Public Health Law), prevalence, mortality rates and trends in chronic renal disease at regional level, patient sociodemographic characteristics, baseline renal disease, comorbidities and associated disabilities - Specifically describe dialysis treatment modalities (method, modality, dose) and changing tendencies towards population requirements and medical practices - Evaluate relative aspects of different dialysis and transplantation modalities and to describe patient trajectories through these treatment modalities - Assess quality and efficacy of care in terms of early detection, dialysis dose, control of anaemia and nutritional balance, particularly with regard to good clinical practice - Evaluate patients' quality of life (Objective 81 of Public Health Law); - Evaluate the medical and economic outcomes of health care practices. |
| Inclusion criteria | Initiation of treatment (dialysis or transplant) for End-Stage Renal Disease (ESRD). |
| Population type | |
| Age |
Newborns (birth to 28 days) 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 | Metropolitan France, overseas countries and territories |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2003 |
| Size of the database | |
| Size of the database (number of individuals) |
Greater than 20 000 individuals |
| Details of the number of individuals | Au 31/12/2012 : 90685- 10048 nouveaux cas- 73491 patients traités- 7146 décès |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Biological data (detail) | Activity 17% Serum Creatinine, Serum Haemoglobin, Serum Albumin, Glomerular filtration rate, Serum Creatinine 19% CNR - Qualification record 2008 14/65 Serum Haemoglobin, Serum Albumin, Serum Erythropoietin |
| Administrative data (detail) | - Identification data - "Outgoing" transfers to another unit, for transplantation, Stoppage of dialysis, Lost to follow-up - "Incoming" transfers from another dialysis unit, Transplantation return, Return after withdrawl |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | An epidemiological research support structure and recruitment of clinical research associates are the conditions imposed by REIN for all regions in the network. Clinical research associate responsibilities have three parts: - continuous completeness checks for new patient registration, events and annual follow-ups, which must take place throughout the year. Clinical research associates may temporarily participate in inputting recorded data completed by physicians into the information system from time to time. - Annual information quality control for all patients is carried out every first quarter before being sent for validation at national level. However, this is only for a limited number of items deemed essential that were collected during the previous year. - Ad hoc checks on patient samples for other data. |
| Participant monitoring |
Yes |
| Details on monitoring of participants | - The systematic annual follow-up for all dialysis patients allows updates to be made to all recorded comorbidities and treatment modalities (on the date dialysis originally began in order to smooth workload over time). - Vital status |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI Health Insurance (MIAM) |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.soc-nephrologie.org/PDF/enephro/registres/rapport_2012/rapport_2012.pdf |
| Link to the document | http://tinyurl.com/PUBMED-REIN |
| Description | Liste des publications dans Pubmed |
| Link to the document | http://tinyurl.com/HAL-REIN |
| Description | Liste des publications dans HAL |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | To be defined |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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