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Clinical Trial Summary

The primary aim of this study is to evaluate the overall quality of life in adult patients with severe haemophilia (an inherited bleeding disorder affecting mainly men) in Turkey and to assess the impact of certain disease and drug related factors (treatment modality, presence of viral disease, inhibitor, etc.) on the quality of life.


Clinical Trial Description

Haemophilia is an inherited bleeding disorder affecting one in 10000 male births worldwide. People with severe haemophilia usually suffer from recurrent life threatening bleeds (e.g. into the brain, digestive system or abdomen) and/or disabling degenerative disease of weight bearing joints (e.g. knees, elbows and ankles)resulting from haemorrhage into the joints. Daily activities of people with haemophilia has been shown to be dramatically hampered by the resultant joint damage. Evaluation of quality of life issues in people with severe haemophilia would help to create awareness of their problems and limitations. This would also set up the scene for developing policies to improve the treatment options/facilities and social life of the patients. Current study aims to assess the quality of life of adult patients with severe haemophilia in a developing country (Turkey) by using a validated Quality of Life Questionnaire (Turkish version of Haem-A-QoL). ;


Study Design

Observational Model: Cohort, Time Perspective: Cross-Sectional


Related Conditions & MeSH terms


NCT number NCT01623960
Study type Observational
Source Turkish Society of Hematology
Contact M.Cem Ar, MD, PhD
Phone +905326818890
Email mcemar68@yahoo.com
Status Not yet recruiting
Phase N/A
Start date October 2012
Completion date February 2014

See also
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Recruiting NCT02197611 - Development of a Specific Measure for Assessing Adherence in Adult Patients With Hemophilia. N/A
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Recruiting NCT03914209 - Extended Half-Life (EHL) Clotting Factor for Improving the Musculoskeletal Health of Patients With Hemophilia
Completed NCT04205188 - The Effects of Therapeutic Exercises on Kinesiophobia in Haemophilic Patients. N/A