An observational study in Patients With Haemophilia, sponsored by Universidad Católica San Antonio de Murcia. Status unknown at 1 site in Spain. Open to male participants aged 6 Years to 65 Years. Per ClinicalTrials.gov, last updated 2015-04-30.
Sponsored by Universidad Católica San Antonio de Murcia · Observational
Multidisciplinary evaluation of patients with hemophilia Spain, El Salvador and Bolivia. It aims to analyze and evaluate the skeletal muscle of patients affected with hemophilia Spain, El Salvador and Bolivia; describe deficit mobility and muscular strength, depending on the degree of injury, age, presence of inhibitors and the development of physical activity; identify the relationship between the functional deficit by clinical assessment performed with the use of validated measurement scales, the assessment of the degree of injury to specific scales of hemophilia; detect biomechanical alterations of the lower limbs and their impact on gait in patients with hemophilia; and evaluate the factors that influence the perception of illness and quality of life of patients with hemophilia.
Descriptive study of joint involvement in patients with hemophilia Spain, El Salvador and Bolivia.
Descriptive study of abnormal joint mobility and muscle strength as a result of acute conditions or the development of chronic articular sequelae.
Descriptive study of biomechanical changes in lower limb joints and their impact on gait in patients with hemophilia.
Descriptive study of the overall articular involvement (crepitus, pain, biomechanical and functional changes) in patients with hemophilia.
Descriptive study of the relationship between skeletal muscle pathology in patients with hemophilia and their perception of it, and their quality of life.
866 studies on the registry are indexed under Hemophilia A; 137 are open to participants now.
This study's planned enrollment of 100 is above the median of 80 across 314 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →Universidad Católica San Antonio de Murcia is the lead sponsor of 132 studies on the registry; 18 are open to participants now.
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Patients with haemophilia from Spain, El Salvador and Bolivia
Exclusion Criteria:
Group of patients with hemophilia recruited in the Region of Murcia (Spain) and evaluated in the Universidad Católica San Antonio between June and July 2014.
Group of patients with hemophilia recruited in the city of San Salvador (El Salvador) and evaluated in the Hospital Nacional Rosales and the Hospital Nacional de niños "Benjamín Bloom" from San Salvador in April 2014.
Group of patients with hemophilia recruited in the city of Santa Cruz (Bolivia) and evaluated at the Hospital Nacional de niños in Santa Cruz August 2014.
Assessment of range of motion of elbow, knee and ankle
We will use a goniometric evaluation, along the lines indicated by Querol for assessing the range of motion in patients with hemophilia
Time frame: Screening visit
Assessment of muscle strength of arm, thigh and leg
We will use a measure of muscular balance with the guidelines outlined by Daniels, with the adaptation of Querol for assessing muscle strength in patients with hemophilia
Time frame: Screening visit
Assessment of perception of joint pain
We will use the visual analogue scale (VAS) for the assessment of joint pain in patients with hemophilia, with a scale from 0 (no pain) to 10 (maximum pain).
Time frame: Screening visit
Assessment of the status joint
We will use the specific questionnaire haemophilia: Haemophilia Joint Healts Score (HJHS) for the assessment of joint status
Time frame: Screening visit
Evaluation of the performance of activities of daily living
We will use the questionnaire Haemophilia Activities List (HAL), specific for patients with hemophilia
Time frame: Screening visit
Assessment of physical performance of patients with hemophilia
We will use the Physical Functioning scale (HEP-Test-Q), specific for patients with hemophilia
Time frame: Screening visit
Assessment of personality traits of children
We will use the questionnaire Eysenck Personality Questionnaire Junior (EPQJ)
Time frame: Screening visit
Evaluation of perceived quality of life for patients with hemophilia
We will use the Hemophilia-QoL and the Child Health and Illness Profile (CHIP-CE) questionnaires for children; and the Hemophilia-QoL and A36 and 36 Health Survey (SF36) questionnairesfor adults .
Time frame: Screening visit
Clinical variables of patients with hemophilia
Age (years); weight (kg); Size (cm); type of haemophilia (A or B); severity of hemophilia (severe / moderate / mild); pharmacological treatment (prophylactic / on demand); presence of inhibitors; central venous catheter; family history of hemophilia; hemarthrosis in the last month; arthropathy diagnosed in some joint; use of orthoses
Time frame: Screening visit
Socio-demographic variables of patients with hemophilia
Number of hospital visits per year (reason); Distance to hospital (km); Academic formation of the patient (university studies / vocational training / basic studies / no studies); academic formation of the parents (university studies / vocational training / basic studies / no studies); patient employment (self-employment / employment has as an employed person / unemployed / retirement); parents employment (self-employment / employment has as an employed person / unemployed / retirement);
Time frame: Screening visit
This study is status unknown, as verified in Mar 2014. You cannot join it, but the record below documents what was studied.
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Universidad Católica San Antonio de Murcia