Status:

UNKNOWN

Rare Bleeding Disorders in the Netherlands

Lead Sponsor:

Radboud University Medical Center

Collaborating Sponsors:

Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)

Academisch Ziekenhuis Maastricht

Conditions:

Rare Bleeding Disorders

Eligibility:

All Genders

1+ years

Brief Summary

Rationale: Rare bleeding disorders (deficiency of fibrinogen, factor II, V, V\&VIII, VII, X, XI, XIII, α2-antiplasmin or plasminogen activator inhibitor 1) are not well defined with respect to their c...

Detailed Description

Primary objectives: * Describe the epidemiology, clinical presentation, bleeding score, bleeding episodes, quality of life, laboratory parameters, genetics and treatment of homozygous and known heter...

Eligibility Criteria

Inclusion

  • Established homozygous or known heterozygous rare bleeding disorder due to deficiency or dysfunction of fibrin, FII, FV, FV \& FVIII, FVII, FX, FXI, FXIII, alpha-2-antiplasmin and PAI-1 ;
  • Age 1 year and older;
  • For patients ≥ 16 years old; written informed consent.
  • For patients 12-16 years old; written informed consent from both the patient and their parents/legal guardian(s).
  • For patients \<12 years old; written informed consent from their parents/legal guardian(s).

Exclusion

  • No informed consent given;
  • Residency outside of the Netherlands

Key Trial Info

Start Date :

November 7 2017

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

January 1 2022

Estimated Enrollment :

300 Patients enrolled

Trial Details

Trial ID

NCT03347591

Start Date

November 7 2017

End Date

January 1 2022

Last Update

January 15 2021

Active Locations (7)

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Page 1 of 2 (7 locations)

1

Academisch Medisch Centrum

Amsterdam, Netherlands

2

Maxima Medisch Centrum

Eindhoven, Netherlands, 6500 PD

3

University Medical Center Groningen (UMCG)

Groningen, Netherlands

4

Maatricht UMC+

Maastricht, Netherlands, 6202 AZ