An observational study in Haemophilia A and Haemophilia B, sponsored by Swedish Orphan Biovitrum. Completed at 5 sites in 3 countries. Open to participants aged 5 Years and older. Per ClinicalTrials.gov, last updated 2024-03-06.
Sponsored by Swedish Orphan Biovitrum · Observational
Among 15 studies in Hemophilia A by Swedish Orphan Biovitrum — none open to participants now, 3 under way, 1 of them phase 3. Hemophilia A · Swedish Orphan Biovitrum.
Among the 15 studies in Hemophilia A by Swedish Orphan Biovitrum, this one is one of 2 that started in 2018, is one of 7 observational ones, and was the 5th registered.
844 studies on the registry are indexed under Hemophilia A; 138 are open to participants now.
This study's enrollment of 2,300 is above the median of 81 across 310 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →None of the 15 studies in Hemophilia A by Swedish Orphan Biovitrum is open now.
Of the 88 Hemophilia A studies recruiting now, 52 (59%) set no upper age limit and 30 (34%) stop at 75 or younger; 54 take children under 18; 10 take healthy volunteers.
This study: 5 Years and older · all sexes · no healthy volunteers.
The full table on the hub →15 studies; the count open now beside each. This study's row is marked.
First in 2014; this study’s year is marked. 2 started in 2018.
Median enrollment 63 across the 8 interventional studies, 361 across the 7 observational. Of the 12 that completed or were terminated, 2 (17%) have results posted.
Swedish Orphan Biovitrum is the lead sponsor of 82 studies on the registry; 6 are open to participants now.
Of its 17 completed or terminated interventional studies of FDA-regulated products, 15 (88%) have results posted.
2 of the studies in Hemophilia A by Swedish Orphan Biovitrum that are under way reach primary completion within a year, 1 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT06716814Phase 3Swedish Orphan BiovitrumStudy to Provide Continued Access to Treatment for Patients Completing a Previous Trial With Efanesoctocog Alfa | 2027-03 |
| NCT06752850Swedish Orphan BiovitrumA Study to Investigate the Course of Synovial Hypertrophy in Patients With Haemophilia A on Efanesoctocog Alfa Prophylaxis | 2026-11-17 |
Among the 15 studies in Hemophilia A by Swedish Orphan Biovitrum, from their registry updates:
Nothing recorded among them since 2026-09-25.
The puropse of this non-interventional register and survey study is to identify the patterns of prescribed pain, anti-depressive and anti-anxiety medication and management of pain, depression and anxiety for people with haemophilia. The study will be conducted in the Nordic countries (Sweden, Norway, Denmark, Finland) and the aim is to cover the entire haemophilia population in the register part of the study.
All PwH in Sweden, Norway, Denmark and Finland
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
To describe the usage of prescribed pain, anti-depressive and anti-anxiety medication during a 10-year period based on retrospective data from patient and drug registries. Population: All People with Haemophilia A and B identified through national administrative register or from local register at each treatment centre. The People with Haemophilia group will be compared against an age and gender matched control group from the general population.
The survey will be sent out to the relevant physician at each Haemophilia Treatment Centers (HTC) with direct and frequent patient contacts.
All People with Haemophilia (PwH) listed at HTCs will be invited to participate in the patient survey.
Use of medication for pain, depression and anxiety (yes/no?)
Based on Registry data
Time frame: Retrospectively 10 years
Annualised consumption of pain medications as assessed by filled prescription
Based on Registry data
Time frame: Retrospectively 10 years
Annualised consumption of anti-anxiety medications as assessed by filled prescription
Based on Registry data
Time frame: Retrospectively 10 years
Annualised consumption of anti-depressive medications as assessed by filled prescription
Based on Registry data
Time frame: Retrospectively 10 years
Duration of pain medications as measured by expected doses of medicines.
Based on Registry data
Time frame: Retrospectively 10 years
Duration of anti-depressive medications as measured by expected doses of medicines.
Based on Registry data
Time frame: Retrospectively 10 years
Duration of anti-anxiety medications as measured by expected doses of medicines.
Based on Registry data
Time frame: Retrospectively 10 years
Pharmacological and non-pharmacological treatments for management of Health-Related Quality of Life (HRQoL) impairment, including treatment of pain
Assessed by Health Care Professional (HCP) survey in Part B1
Time frame: Inclusion in survey study
Pharmacological and non-pharmacological treatments for management of HRQoL impairment, including treatment of anxiety
Assessed by HCP survey in Part B1
Time frame: Inclusion in survey study
Pharmacological and non-pharmacological treatments for management of HRQoL impairment, including treatment of depression
Assessed by HCP survey in Part B1
Time frame: Inclusion in survey study
The perspective and experience of HCPs with direct and frequent patient Contacts on the strategies for the management of HRQoL impairment, including treatment of pain at each Haemophlia Treatment Centre
Assessed by HCP survey in Part B1
Time frame: Inclusion in survey study
The perspective and experience of HCPs with direct and frequent patient Contacts on the strategies for the management of HRQoL impairment, including treatment of anxiety at each Haemophlia Treatment Centre
Assessed by HCP survey in Part B1
Time frame: Inclusion in survey study
The perspective and experience of HCPs with direct and frequent patient Contacts on the strategies for the management of HRQoL impairment, including treatment of depression at each Haemophlia Treatment Centre
Assessed by HCP survey in Part B1
Time frame: Inclusion in survey study
Self-reported current and previous use of medications for pain
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Self-reported current and previous use of medications for anxiety
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Self-reported current and previous use of medications for depression
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Social and physical activity level
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Euro-QoL 5 Dimensions 5 Levels (EQ-5D-5L)
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Patient satisfaction with current management of pain
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Patient satisfaction with current management anxiety
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Patient satisfaction with current management of depression
Assessed by patient survey in Part B2
Time frame: Inclusion in survey study
Patient satisfaction of received treatment for pain
Assessed by patient survey in Part B2
Time frame: Inclusion in Survey study
Patient satisfaction of received treatment for anxiety
Assessed by patient survey in Part B2
Time frame: Inclusion in Survey study
Patient satisfaction of received treatment for depression
Assessed by patient survey in Part B2
Time frame: Inclusion in Survey study
Ran from Oct 2018 to primary completion in Jan 2020, 15 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Mar 2024. You cannot join it, but the record below documents what was studied.
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