Validation and Implementation of Online Information Portal for Congenital Aortic and Pulmonary Valve Disease.

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON29034

Enrollment

250

Registered

2017-05-30

Start date

2015-09-21

Completion date

Unknown

Last updated

2024-02-28

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

Conditions

Congenital heart disease

Interventions

Online information portal for (the parents of) patients

Eligibility

Inclusion criteria

Inclusion criteria: All patients aged between 18 and 40 years and parents/caregivers of patients <18 years of age that are diagnosed with congenital aortic or pulmonary valve disease will be prospectively included.

Exclusion criteria

Exclusion criteria: Mentally incompetent and/or legally incapable subjects will be excluded.

Design outcomes

Primary

Measure	Time frame
• Disease-specific knowledge	—

Secondary

Measure	Time frame
• HADS • SF-36 Mental Component • Autonomy Preference Index • Control Preferences Scale • Decisional Conflict Scale • Experiences with and views on patient information and decision-making	—

Contacts

Public ContactJonathan R.G. Etnel

Bd-577

j.etnel@erasmusmc.nl06 558 751 08

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)