Interface management concepts in health care of rare diseases
Conditions
Interventions
Group 1: Representatives of centres for rare diseases, cooperating practitioners (general and specialised), patients diagnosed with a rare disease receiving treatment from a centre for rare diseases a
participants do not receive any intervention
this is a non-interventional observational study
Sponsors
Universitätsklinikum Hamburg-Eppendorf
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Representatives of centres for rare diseases and cooperating physicians, patients diagnosed with a rare disease or their parents/caregivers, representatives of patient organizations
Exclusion criteria
Exclusion criteria: language barriers, cognitive impairments, unable to consent, unwilling to consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Phase 1: Expert workshop, on site visitations and cross-sectional telephone assessment of interface management concepts in rare diseases; identification of criteria for assessing the quality of care coordination in rare diseases Phase 2: cross-sectional quantitative and qualitative survey of acceptance, satisfaction and experiences with existing interface management concepts Aim: development of best practice recommendations to improve the intersectoral care coordination in rare diseases | — |
Secondary
| Measure | Time frame |
|---|---|
| if applicable: differences regarding pediatric and adult health care, undiagnosed and diagnosed patients, specific and interdisciplinary health care, out- and inpatient health care, cross-sectional qualitative and quantitative survey | — |
Countries
Germany
Contacts
Public ContactLaura Inhestern
Universitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Medizinische Psychologie
Outcome results
None listed