Haemophilia Clinical Trial
Official title:
A Nationwide Multicenter Study on the Quality of Life in Adult Patients With Severe Haemophilia in Turkey
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.
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). ;
Observational Model: Cohort, Time Perspective: Cross-Sectional
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Completed |
NCT02229331 -
Biomechanical Determinants and Patterns Associated to the Pathophysiological Cascade of Ankle Arthropathy in Children With Haemophilia: Non-invasive In-vivo Measurement of Foot Joints in Children With Haemophilia During Gait.
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| Completed |
NCT02870114 -
National Survey of People With Haemophilia in Portugal
|
N/A | |
| Recruiting |
NCT02197611 -
Development of a Specific Measure for Assessing Adherence in Adult Patients With Hemophilia.
|
N/A | |
| Unknown status |
NCT02582450 -
Validation of a Specific Measure for Assessment of Compliance With Treatment in Patients With Hemophilia
|
N/A | |
| Completed |
NCT05138224 -
Prevalence of Autistic Spectrum Disorder (ASD) in Children With Haemophilia
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| Recruiting |
NCT03287999 -
Inter Individual Variability in Initiation Pathway Activation and Regulation and Phenotypic Heterogeneity in Patients With Haemophilia A and B
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| Completed |
NCT02825667 -
Effectiveness of the Myofascial Therapy in the Hemophilic Arthropathy of Ankle
|
N/A | |
| Completed |
NCT03818529 -
ATHN 8: Previously Untreated Patients (PUPs) Matter Study
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| Completed |
NCT05108480 -
Self-myofascial Release With Foam Roller in Patients With Hemophilic Knee Arthropathy
|
N/A | |
| Completed |
NCT02781233 -
A Progressive Resistance Training Program in Patients With Haemophilia
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N/A | |
| Active, not recruiting |
NCT02581735 -
Effectiveness of the uPatient Platform in Prophylactic Treatment in Hemophilia
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N/A | |
| Active, not recruiting |
NCT02512211 -
Validation of Questionnaires HAL and HEP
|
N/A | |
| Recruiting |
NCT02191436 -
Adherence to Treatment in Hemophilia
|
N/A | |
| Completed |
NCT03264014 -
Combining Registry Data in Haemophilia: TARGET H
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N/A | |
| Recruiting |
NCT02198430 -
Multidisciplinary Evaluation of Patients With Hemophilia
|
N/A | |
| Not yet recruiting |
NCT06046235 -
Virtual Evaluations of Joint Health Using Wearable Sensors in Persons With Haemophilia (VESPA)
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| Completed |
NCT03529474 -
Psychology and Physiotherapy Approach of Chronic Pain in Patients With Hemophilia
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N/A | |
| Completed |
NCT05425888 -
Functional and Proprioceptive Status in Patients With Hemophilic Ankle Arthropathy
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| Recruiting |
NCT03914209 -
Extended Half-Life (EHL) Clotting Factor for Improving the Musculoskeletal Health of Patients With Hemophilia
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| Completed |
NCT04205188 -
The Effects of Therapeutic Exercises on Kinesiophobia in Haemophilic Patients.
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N/A |