Shared decision-making in rare hematological and oncological diseases - system-wide implementation

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

DRKS

Registry ID

DRKS00040366

Enrollment

Registered

2026-05-21

Start date

2026-07-01

Completion date

Unknown

Last updated

2026-06-01

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

Conditions

C94.4 D59.5 D60-D64

Interventions

Group 1: This is a single-arm, intraindividual pre–post study design with follow-up assessments: adult patients diagnosed with primary myelofibrosis, post-essential thrombocythemia (post-ET) myelofibr

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: • Diagnosis of primary myelofibrosis or post-ET/PV myelofibrosis • or: diagnosis of paroxysmal nocturnal hemoglobinuria • or: diagnosis of acquired aplastic anemia

Exclusion criteria

Exclusion criteria: • language barrier

Design outcomes

Primary

Measure	Time frame
The short-term change in patient activation will be assessed intraindividually between T0 and T1 using the PAM13-D questionnaire.	—

Secondary

Measure	Time frame
Decision context, long-term change in patient activation (PAM13-D), decisional uncertainty (DCS), decision-relevant knowledge, sociodemographic characteristics, willingness to participate in the study.	—

Countries

Germany

Contacts

Public ContactDeborah Christen

Uniklinik RWTH Aachen, Medizinische Klinik IV

dchristen@ukaachen.de+492418035597

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Jun 11, 2026