An observational study in Haemophilia, sponsored by Universidad de Murcia. Completed at 1 site in Spain. Open to male participants aged 8 Years to 60 Years. Per ClinicalTrials.gov, last updated 2016-10-20.
Sponsored by Universidad de Murcia · Observational
Multidisciplinary assessment of the physical, functional and psychosocial alterations in patients with hemophilia around the country. The aims of this study are:
Observational study that will allow us:
Analyze and evaluate the skeletal muscle of patients with hemophilia involvement.
Describe the periarticular muscular deficit, 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 scales measure force production with patients.
Observe the presence of joint bleeds in children with hemophilia and synovial hypertrophy developing therein.
Detect biomechanical abnormalities of the lower limbs and their impact on gait in patients with hemophilia.
Assess the factors that influence the perception of illness and quality of life of patients with hemophilia.
866 studies on the registry are indexed under Hemophilia A; 137 are open to participants now.
This study's enrollment of 104 is above the median of 80 across 314 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →Universidad de Murcia is the lead sponsor of 77 studies on the registry; 16 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients with haemophilia attending hemophilia shelters organized by the Federación Española de Hemofilia (Fedhemo) in the Centro de Formación Permanente en Hemofilia La Charca (Murcia, Spain).
Exclusion Criteria:
Patients with haemophilia recruited for multidisciplinary assessment of the main physical, functional and psychosocial variables.
Children without hemophilia
Assess the Joint Damage
Measurement with Haemophilia Joint Health Score 2.1 (HJHS)
Time frame: Screening visit
Assess the Perception of Quality of Life
Measurement through the Child health profile (Childhood Health and Illness Perception; CHIP-CE).
Time frame: Screening visit
Assessment of Clinical Patient Variables
Hemophilia type measuring (A or B)
Time frame: Screening visit
Measure of Weight
Measure of weight
Time frame: Screening visit (pretreatment assessment)
| Milestone | Patients | Control Group |
|---|---|---|
| Started | 53 | 51 |
| Completed | 53 | 51 |
| Not completed | 0 | 0 |
Measurement with Haemophilia Joint Health Score 2.1 (HJHS)
| points | Patients | Control Group |
|---|---|---|
| Assess the Joint Damage | 0.36 ± 0.84 | 0 ± 0 |
Measurement through the Child health profile (Childhood Health and Illness Perception; CHIP-CE).
| points | Patients | Control Group |
|---|---|---|
| Assess the Perception of Quality of Life | 38.32 ± 4.72 | 37.55 ± 5.91 |
Hemophilia type measuring (A or B)
| Percentage of Participants with Hemophil | Patients | Control Group |
|---|---|---|
| Assessment of Clinical Patient Variables | 92.5 | 0 |
Measure of weight
| Kg | Patients | Control Group |
|---|---|---|
| Measure of Weight | 41.59 ± 11.82 | 39.36 ± 9.64 |
Collected over Serious and Other (Not Including Serious) Adverse Events were not collected/assessed. Non-serious events are listed at a 0% frequency threshold.
| Group | Deaths | Serious | Other |
|---|---|---|---|
| Patients | — | — | — |
| Control Group | — | — | — |
| Age, Continuous(years) | Patients | Control Group | Total |
|---|---|---|---|
| Mean | 10.08 ± 1.36 | 9.78 ± 1.22 | 10.04 ± 1.31 |
| Sex: Female, Male(Participants) | Patients | Control Group | Total |
|---|---|---|---|
| Female | 0 | 0 | 0 |
| Male | 53 | 51 | 104 |
| Region of Enrollment(participants) | Patients | Control Group | Total |
|---|---|---|---|
| Spain | 53 | 51 | 104 |
This study is completed, as verified in Jun 2016. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Universidad de Murcia