Cancer predispostion Pathogenic TP53 germline variant C97 Z80
Conditions
Interventions
Group 1: People with LiFraumeni Syndrome (LFS)
relaitves of peoole with Li-Fraumeni syndrome are questioned about psychosozial aspects regarding LFS -paper-based, APP Based and viwa interviews
Sponsors
Universitätsfrauenklinik Heidelberg
Eligibility
Sex/Gender
All
Age
18 Years to 120 Years
Inclusion criteria
Inclusion criteria: Diagnosis of LFS, Li-Fraumeni-Like-Syndrome, pathogenic TP53 germline variant - OR - Relatives (relative, partner, close person) - From the age of 18 - German as mother tongue or very good knowledge of German - Existence of an informed written consent to participate in the study
Exclusion criteria
Exclusion criteria: unclassified variant in the TP 53 germline (VUS), <18 years, not able to provide written informed consent, missing buisness capability, no sufficeint german language skills, unablility to pariticpate in interviews or answer questionairs, missing informed consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary aim of this study is: a) the needs assesment for improving the medical and psychosocial care of people with LFS and their close relatives, who form the overall study group. b) Feasibility and adherence to app support by the surveillance for people with LFS. c) What is the state anxiety trend of people with LFS in respect to the surveillancve? | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary target criteria 1. Cancer worry 2. Qualitiy of Life 3. To what extent occur psychopathologies in those affected or related personals? | — |
Countries
Germany
Contacts
Public ContactImad Maatouk
Universitätsklinikum Heidelberg
Outcome results
None listed