Glanzmann National History Study (GNHS)
The Glanzmann Disease WG who has just launched the Glanzmann National History Study (GNHS) to understand Glanzmann thrombasthenia better. The GNHS aims is to estimate the haemorrhagic burden in participants with diagnosed Glanzmann thrombasthenia and to establish a patient registry as a potential source for recruitment to future research.
The WG has finalised the protocol, which has two stages:
- NHS documents filled in by the physician on a CRF study and questionnaires for the patients to fill in online too. Two self-reported bleeding assessment tools will be used: the ITP bleeding tool and the ISTH-BAT. In addition, a QoL questionnaire will be used once.
- The second stage is blood sampling, with which they can determine the disease with genetics and the presence of allo-antibodies
The first 10 patients have been included
We are currently at Fase #5 Process of first patients inclusion
The phases:
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Fase 1: Idea and identification of centres to participate in the study
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Fase 2: Definition of the protocol
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Fase 3: Ethical approval
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Fase 4: Initiation visit
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Fase 5: First patients inclusion
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Fase 6: GNHS – ongoing recruitment
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Fase 7: Final patient inclusion
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Fase 8: Data closure and analysis