Paroxysmal Nocturnal Hemoglobinuria
Conditions
Interventions
None listed
Sponsors
Chugai Pharmaceutical Co., Ltd.
Japan PNH Study Group
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: <Inclusion criteria for qualitative interview survey> Subjects who meet all the following criteria will be included in this study. (1) Diagnosed with PNH. (2) Under or have had previous experience of PNH treatment. (3) More than 16 years old at the time of consent (for those between 16 and 18 years of age, those who can understand the explanation document without the need for an assent document). (4) Have ability to carry out the study. (5) Provided consent to participate the study by the patient (In case the patient is less than 18 years old, consent from both the patient and her/his legal representative is required). (6) Have ability to complete the procedures of the protocol. (7) Live in Japan at the time of consent. (8) Have the equipment and suited environment for communication to conduct the interviews. <Inclusion criteria for the quantitative questionnaire survey> Subjects who meet all the following criteria will be included in the study. (1) Diagnosed with PNH. (2) Under or have had previous experience of PNH treatment. (3) More than 16 years old at the time of consent (for those between 16 and 18 years of age, those who can understand the explanation document without the need for a special assent document). (4) Have ability to carry out the study. (5) Provided consent to participate the study by the patient (In case the patient is less than 18 years old, consent from both the patient and her/his legal representative is required). (6) Have ability to complete the procedures of the protocol. (7) Live in Japan at the time of consent. (8) Have the equipment and suited environment for communication to complete the web entry and survey. *Those who participated in the qualitative survey can also participate in the quantitative survey if they meet the above inclusion criteria.
Exclusion criteria
Exclusion criteria: Subjects who meet following criteria will be excluded from the study. (1) Have difficulty in obtaining consent or conducting this study due to lack of Japanese language skills. (2) Unable to participate in the survey in person.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| <Qualitative interview survey> Relationship between preferences and background factors of treatment choice in patients with PNH. <Quantitative questionnaire survey> Relative preference for each attribute of PNH treatment (Candidate factors of treatment selection in the quantitative questionnaire survey). Relative preference for each level of each attribute of PNH treatment. | — |
Secondary
| Measure | Time frame |
|---|---|
| <Qualitative interview survey> PNH patients' subjective experience of symptoms and treatment burden and the importance of their impact on daily life. <Quantitative questionnaire survey> Relative preference for each attribute of PNH treatment by patient background. Relative preference for each level of each attribute of PNH treatment by patient background. | — |
Countries
Japan
Contacts
Public ContactChugai Pharmaceutical Co., Ltd.
Medical Affairs Div. Specialty Medical Science Dept.
Outcome results
None listed