D67
Conditions
Interventions
Group 1: Patients who have received factor IX gene therapy will be interviewed by phone.
Sponsors
Hämophiliezentrum/Hämostaseologie, Universitätsklinikum Frankfurt
Eligibility
Sex/Gender
Male
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: - patients with haemophilia B - patients who have participated in a clinical study on factor IX gene therapy in Germany, study centres Frankfurt or Berlin
Exclusion criteria
Exclusion criteria: - patients who were recruited in other study centres
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| • Gene therapy: implementation, effectiveness, satisfaction with the gene therapy, reasons for participation in the study • social aspects such as work, family, friends, and social activities • physical aspects such as impairments, mobility, and daily (treatment) routine • emotional aspects such as fears and concerns, expectations • patient care, including prior information about gene therapy and support from the treating physician The data will be collected once ??????? patient interviews. | — |
Secondary
| Measure | Time frame |
|---|---|
| age duration of disease FIX substitution bleeding events | — |
Countries
Germany
Contacts
Public ContactWolfgang Miesbach
Hämophiliezentrum/Hämostaseologie, Universitätsklinikum Frankfurt
Outcome results
None listed