Glanzmann Natural History Study (GNHS)
The Glanzmann Disease WG who has just launched the Glanzmann Natural 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
EAHAD Global Survey on the Management of the Preconception phase, Pregnancy, and Delivery in Patients with Glanzmann Thrombasthenia
Glanzmann thrombasthenia (GT) is a rare inherited platelet disorders, characterised by decreased platelet aggregation and bleeding tendency. The stage of preconception can be very challenging for women with GT due to the need to stop hormonal contraceptives to conceive. Pregnancy and childbirth are also challenging life events with bleeding risks for both mother and child.
Currently, there are no treatment guidelines available for the preconception phase, pregnancy, and childbirth in women with GT and the treatment is heterogeneous. Therefore, the Glanzmann Thrombasthenia Working Group and the Women and Girls with Bleeding Disorders Working Group of the EAHAD designed a survey on clinical practices in the management of these phases in women with GT to gather insights and expert opinions.
The survey will remain open from January till March and will be promoted at the EAHAD 2025 congress in Milan.