An observational study in Hemophilia, sponsored by Institute of Hematology & Blood Diseases Hospital, China. Active, not recruiting at 1 site in China. Open to male participants aged 12 Minutes and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-03-06.
Sponsored by Institute of Hematology & Blood Diseases Hospital, China · Observational
The overarching goal of the EPOCH project is to:
866 studies on the registry are indexed under Hemophilia A; 137 are open to participants now.
This study's planned enrollment of 500 is above the median of 80 across 314 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →Institute of Hematology & Blood Diseases Hospital, China is the lead sponsor of 398 studies on the registry; 293 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Male patients, aged ≥12 years at the index date
Exclusion Criteria:
Successfully registered research centers
Successfully registered research centers in Trial Phase
Time frame: Baseline until week 52
Number of enrolled patients
Number of enrolled patients in Trial Phase
Time frame: Baseline until week 52
Proportion of completed questionnaires
Proportion of completed questionnaires for the Trial Phase
Time frame: Baseline until week 52
Proportion of missing data
Proportion of missing data for the Trial Phase
Time frame: Baseline until week 52
Qualitative information on study barriers and facilitators
Qualitative information on study barriers and facilitators for the Trial Phase
Time frame: Baseline until week 52
Diagnostic and treatment burden for hemophilia patients
Diagnostic and treatment burden for hemophilia patients for the Implementation Phase
Time frame: Baseline until week 52
Costs of hemophilia diagnosis and treatment
Costs of hemophilia diagnosis and treatment for the Implementation Phase
Time frame: Baseline until week 52
Measure treatment patterns and their variability
Measures of treatment patterns will be defined by type of treatment product, dose and frequency of administration. These measures will be considered in relation to severity of disease and eventually presence of inhibitors and relevant comorbidities. This measure will be collected both cross-sectionally and prospectively and reported directly by the patients. By organizing patient-level data and applying statistical analysis methods, we calculated the total cost of hemophilia diagnosis and treatment in China and specific regions.
Time frame: Baseline until week 52
Measure levels of access to care
The access to care will be calculated considering the mean number of visits/consultations/follow-ups and hospitalizations for patient and stratified in relation to severity of disease, frequency of bleeding and presence of inhibitors/comorbidities and haemophilia related complications or health problems.
Time frame: Baseline until week 52
Estimate the impact of haemophilia and its treatment on patients reported outcomes
General health problems are defined by determinants like use of mobility aids and assistive devices, use of pain medication, presence of and how acute pain and chronic pain interfere with daily life, difficulty with daily activities, surgical history and concurrent medical problems and work/school life. Haemophilia-related health problems refer to disease severity, inhibitor status and history, bleeding frequency and history, treatment regimen and history and presence of target joint(s)
Time frame: Baseline until week 52
Plan to share: Yes
No publications or documents are linked to this record.
This study is active, not recruiting, as verified in Mar 2026. 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.
Institute of Hematology & Blood Diseases Hospital, China