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OpenTrials
Completed

NCT Number: NCT05315232

The Experiences of People Who Live With Glanzmanns Thrombasthenia.

To understand the lived experiences of people with Glanzmanns Thrombasthenia

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Key information

Conditions

Glanzmann Thrombasthenia Blood Coagulation Disorders Blood Coagulation Disorders, Inherited Blood Platelet Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhagic Disorders Thrombasthenia

Age range

0 year–100 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Oxford University Hospitals NHS Foundation Trust

Oxford, Oxfordshire, OX3 7LE, United Kingdom

About this study

A qualitative study of people with Glanzmanns Thrombasthenia including an on-line survey, qualitative in-depth interviews and bleed diary completion.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Clinical diagnosis of congenital (inherited) Glanzmanns Thrombasthenia

Exclusion criteria

Acquired Glanzmanns Thrombasthenia

Treatment and study plan

survey and interview

Other

qualitative assessment

Other names: diary completion

Primary outcomes

  1. to understand the impact of GT on quality of life of affected individuals and their families.

    Time frame: one year

    Incidence of reported impact of GT on daily life using validated questionnaires EQ5D, MIQ, PHQ9, Rosenbergs self esteem scale.

Secondary outcomes

  1. Identify levels of acceptability of current treatments and management approaches

    Time frame: one year

    Rate of reported satisfaction with current treatments using self efficacy to manage disease assessment tool

  2. Identify areas of unmet need among people with GT

    Time frame: one year

    Rate of reported unmet need using ED5D and MIQ

Sponsors and collaborators

Lead sponsor

Haemnet

Other

Collaborators

  • Hemab ApS

Registry information

Official study title

Glanzmanns 360. The Lived Experience of People With Glanzmanns.

Important dates

Study start
2022
Primary completion
2023
Study completion
2023
First posted
Apr 7, 2022
Registry last updated
Mar 13, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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