EUROCORD - Follow-up of a cohort of patients who received umbilical cord blood transplantation with malignant and non-malignant haematological diseases
Head :
Rocha Vanderson, EUROCORD- OFFICE DE RECHERCHE CLINIQUE EN HEMATOLOGIE ET IMMUNODEFICIENCE
Last update : 07/16/2014 | Version : 1 | ID : 60097
| General | |
| Identification | |
| Detailed name | Follow-up of a cohort of patients who received umbilical cord blood transplantation with malignant and non-malignant haematological diseases |
| Sign or acronym | EUROCORD |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL: 01/07/2001 |
| General Aspects | |
| Medical area |
Cardiology Hematology |
| Health determinants |
Iatrogenic |
| Others (details) | Haemopathy |
| Keywords | engraftment, reaction, graft against the host, acute, chronic, Health episodes, relapse, mortality |
| Scientific investigator(s) (Contact) | |
| Name of the director | Rocha |
| Surname | Vanderson |
| Address | 75010 PARIS |
| Phone | + 33 (0)1 42 49 48 23 |
| vanderson.rocha@sls.aphp.fr | |
| Unit | EUROCORD- OFFICE DE RECHERCHE CLINIQUE EN HEMATOLOGIE ET IMMUNODEFICIENCE |
| Organization | INSTITUT UNIVERSITAIRE D’ HEMATOLOGIE- UNIVERSITE DE PARIS |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Funding | |
| Funding status |
Public |
| Details | DRC-APHP, ABM |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | INSTITUT UNIVERSITAIRE D’HEMATOLOGIE- EUROCORD/ DBIM |
| 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 is made on the basis of: |
Another treatment or procedure |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Inclusion method: Prospective Other bodies active in creating this cohort: STEM CELL TRANSPLANTATION CENTRES AND UMBILICAL CORD BLOOD BANKS LOCATED IN FRANCE, EUROPE AND INTERNATIONALLY |
| Database objective | |
| Main objective | General objective: To collect clinical data for new transplant patients and updating cohort follow-up for analysis of prognostic factors from transplantation results in Europe and globally with one or two units of cord blood from umbilical cord blood banks located in France, Europe or internationally. Secondary Objective: To improve data recovery through the creation of an electronic system for collecting data online for cord blood banks in order to facilitate the flow of information from these banks and allow the retrieval of non-analysed to date. To restructure the current information system, notably thanks to the development of new technologies for database management and the application of international standards. To develop a network of electronic communication with other existing databases with PROMISE (EBMT register for bone marrow transplants), Netcord (bank network), the NMDP and CIBMTR in the USA. |
| Inclusion criteria | All patients who received one or two units of umbilical cord blood in Europe or international patients who received one or two units of cord blood from European banks |
| Population type | |
| Age |
Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
International |
| Detail of the geography area | International multicentric cohort (418 centres) involving: 50 COUNTRIES: EUROPE, USA, SOUTH AMERICA, AUSTRALIA and JAPAN |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 10/1998 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 4724 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Declarative data |
| Declarative data (detail) |
Paper self-questionnaire |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Information gathered by another information record: paper questionnaire and on-line (completed by cord blood banks and data managers or transplant centres) |
| Participant monitoring |
Yes |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | EUROCORD DATABASE AND EBMT REGISTER (PROMISE DATABASE) |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24986801 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24972767 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24961645 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24946719 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24605111 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24582782 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24269845 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24141369 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24143000 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24005245 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23955634 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23935024 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23926304 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23692854 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23493783 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23247725 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23242594 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19796275 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22814031 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22773124 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22555150 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22308292 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21982422 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21750089 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21726206 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21277376 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21135856 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21071499 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20882048 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837340 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837334 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837332 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20561593 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20558104 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20538797 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19802021 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24986801 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24972767 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24961645 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24946719 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24605111 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24582782 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24269845 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24141369 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24143000 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/24005245 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23955634 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23935024 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23926304 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23692854 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23493783 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23247725 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/23242594 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19796275 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22814031 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22773124 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22555150 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22308292 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21982422 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21750089 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21726206 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21277376 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21135856 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21071499 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20882048 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837340 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837334 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20837332 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20561593 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20558104 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20538797 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19802021 |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Data may be used by academic teams Access determined by the Eurocord Scientific Council, The French Stem Cell Society (sfgm-tc) and EBMT To be determined if data may be used by industrial teams Contractual access with Biotech and pharmaceutical industry in discussion, but not currently active |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
