To describe the epidemiology, bleeding tendency, laboratory parameters, quality of life and genetics of all known patients in the Netherlands with rare bleeding disorders (RBD). In addition, the study aims to examine the relationship between…
ID
Source
Brief title
Condition
- Coagulopathies and bleeding diatheses (excl thrombocytopenic)
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Description of the clinical phenotype, laboratory phenotype, genotype and
quality of life of patients with rare bleeding disorders
Secondary outcome
not applicable
Background summary
Rare Bleeding Disorders (deficiencies of fibrinogen, factor II, V, V&VIII, VII,
X, XI, XIII, α2-antiplasmin or plasminogen activator inhibitor 1) have a
disperse clinical presentation, bleeding scores, bleeding episodes,
health-related quality of life and laboratory parameters. Moreover, there is no
clear match between phenotype and genotype.
Study objective
To describe the epidemiology, bleeding tendency, laboratory parameters, quality
of life and genetics of all known patients in the Netherlands with rare
bleeding disorders (RBD). In addition, the study aims to examine the
relationship between clinical and laboratory phenotype and genotype.
Study design
Cross-sectional multicentre observational study
Study burden and risks
Minimal risk due to one time venepuncture
Geert Grooteplein Zuid 10
Nijmegen 6525 GA
NL
Geert Grooteplein Zuid 10
Nijmegen 6525 GA
NL
Listed location countries
Age
Inclusion criteria
Rare bleeding disorder
Age 1-99
Exclusion criteria
No informed consent
Residency outside of the Netherlands
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL61027.091.17 |