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"Living well with PNH" - an ethnografic study exploring the lived experience of PNH from a patient and HCP perspective in Japan

"Living well with PNH" - an ethnografic study exploring the lived experience of PNH from a patient and HCP perspective in Japan - "Living well with PNH" - an ethnografic study exploring the lived experience of PNH from a patient and HCP perspective in Japan

Status
Active, not recruiting
Phases
Unknown
Study type
Unknown
Source
JPRN
Registry ID
JPRN-UMIN000054172
Enrollment
6
Registered
2024-04-17
Start date
2023-07-01
Completion date
Unknown
Last updated
2026-06-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Paroxysmal Nocturnal Hemoglobinuria

Interventions

None listed

Sponsors

ReD Associates
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: Respondents must fulfill the following criteria in order to be included in the study: Patient: 1.18 years old or older 2.Confirmed diagnosis of PNH 3.C5 treatment experience (Currently on C5 treatment) 4.Signed informed consent fot the study HCP: 1. works at a medical institution where patients with PNH are seen 2. treats patients with PNH 3. Signed informed consent fot the study

Exclusion criteria

Exclusion criteria: The presence of the following will exclude a subject from inclusion in the study: Patient: 1.Enrollment or participation in market research or another ethnographic study about PNH within the past 3 months 2.Enrollment or participation in a clinical trial currently HCP: N/A

Countries

Japan

Contacts

Public ContactAnne Mette Lottrup

ReD Associates N/A

SobiJapanContact@sobi.com+81-3-4400-6872

Outcome results

None listed

Source: JPRN (via WHO ICTRP) · Data processed: Jul 3, 2026