Haemophilia Clinical Trial
Official title:
Hematology Oncology Center
In the past, due to economic and medical resource constraints, the hemophilia comprehensive
care in China was suboptimal. The BCH data of both retrospective and prospective studies
reveals that for 4-6y and 6-9y patients with severe hemophilia respectively: 45% and 82% of
the patients have suffered from joint bleeding, with mean AJBR of 4.18 and 4.95; and 24.2%
and 33.3% of them with AJBR>10 times, led to arthropathies and made their quality of life be
heavy affected. Now, with the development of economy and medical science in China,
prophylaxis regimens have been initiated in more and more children with hemophilia.
Considering the difference between prophylaxis regimens, the frequency of joint bleeding was
reduced significantly, the quality of life of hemophilia kids improved. An assessment
scoring system for the appropriate validation of individualized prophylaxis treatment
regimens are urgently needed.
Before, the most important assessed indication for hemophilia prophylaxis was the frequency
of joint bleeding. But increasing evidences are showing that there is a discrepancy between
real joint damage and joint bleeding frequency. The single indicator of joint bleeding
frequency is not sufficient to evaluate the joint status of hemophilia children.
Under the World Health Organization's ICF guidelines, the assessment scoring system for
selecting prophylaxis for children with hemophilia should include the tools currently
available for assessment of structure/function of the joint, patient activities and patient
participation in hemophilia healthcare. According to ICF of WHO, the most common bleeding
parts are elbows, knees and ankles, therefore the assessment of children with hemophilia
should include the evaluation of the structure, the function of these 6 Index joints, the
capacity of activities and the capacity of participation of children. These will constitute
a comprehensive hemophilia evaluation system.
In China, exploration of the optimal and individualized prophylaxis regimen is urgent, and
the comprehensive evaluation system should include joint structure and function, body's
activities and individual participation, thus may be more appropriate for the individualized
prophylaxis for Chinese children with hemophilia.
n/a
Endpoint Classification: Efficacy Study, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Treatment
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.
|
||
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
|
||
Recruiting |
NCT03287999 -
Inter Individual Variability in Initiation Pathway Activation and Regulation and Phenotypic Heterogeneity in Patients With Haemophilia A and B
|
||
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
|
||
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
|
N/A | |
Active, not recruiting |
NCT02581735 -
Effectiveness of the uPatient Platform in Prophylactic Treatment in Hemophilia
|
N/A | |
Active, not recruiting |
NCT02512211 -
Validation of Questionnaires HAL and HEP
|
N/A | |
Not yet recruiting |
NCT01623960 -
Quality of Life in Adult Patients With Severe Haemophilia in Turkey
|
N/A | |
Recruiting |
NCT02191436 -
Adherence to Treatment in Hemophilia
|
N/A | |
Completed |
NCT03264014 -
Combining Registry Data in Haemophilia: TARGET H
|
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)
|
||
Completed |
NCT03529474 -
Psychology and Physiotherapy Approach of Chronic Pain in Patients With Hemophilia
|
N/A | |
Completed |
NCT05425888 -
Functional and Proprioceptive Status in Patients With Hemophilic Ankle Arthropathy
|
||
Recruiting |
NCT03914209 -
Extended Half-Life (EHL) Clotting Factor for Improving the Musculoskeletal Health of Patients With Hemophilia
|