Cardiomyopathy Circulatory System Cardiomyopathy
Conditions
Interventions
First-degree relatives of index patients not already known to have a DCM/HCM diagnosis (based on their first screening at a combined Cardiogenetics Clinic), but who are eligible for follow-up accordin
Sponsors
University Medical Center Groningen (Netherlands)
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Aged > 16 years 2. Relative of patients with DCM/ HCM or mutation carriers 3. Participants must be either: 3.1. Carriers of mutations in the LMNA, DES or PLN genes, who are at a higher prior risk for malignant ventricular arrhythmias compared to other groups; or 3.2. Phenotype-negative relatives (over 16 years of age) of index patients with DCM or HCM with a proven pathogenic mutation and therefore at risk for developing DCM or HCM; or 3.3. Phenotype-negative relatives of index patients with potentially inherited DCM or HCM in whom no pathogenic mutation had been identified
Exclusion criteria
Exclusion criteria: 1. Any signs or symptoms of the disease 2. Presence of other heart diseases 3. A medical history with complex co-morbidity
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Uptake percentage of follow-up by relatives at either clinic during the study is measured using patient records following each consultation for 1.5 years 2. Perceived Personal Control (PPC) and patient satisfaction are determined using questionnaires following each consultation for 1.5 years 3. Results of supervision (like additional diagnostics, referral to cardiologist, wrong conclusions) are determined using patient records following each consultation for 1.5 years 4. Resource use and cost reductions are determined using patient records after the consult and personnel/ hospital information at 1.5 years | — |
Countries
Netherlands
Outcome results
None listed