Psychosocial support needs of families with Li-Fraumeni syndrome (LFS) or Fanconi anaemia (FA) - ADDRess - Subproject 2

niversitätsklinikum Würzburg0 sites200 target enrollmentApril 18, 2024

Overview

Phase: Not Applicable
Intervention: Not specified
Conditions: i-Fraumeni-SyndromPathogenic TP53 germline variantFanconi AnemiaORPHA:84ORPHA:524
Sponsor: niversitätsklinikum Würzburg
Enrollment: 200
Status: Recruiting
Last Updated: last year

No summary available.

Registry

who.int

Start Date

April 18, 2024

End Date

TBD

Last Updated

last year

Study Type

Observational

Sex

All

Sponsor

niversitätsklinikum Würzburg

•Adults with Li\-Fraumeni syndrome (Li\-Fraumeni spectrum) or Fanconi anaemia and children and adolescents (aged 12 years and older) with Li\-Fraumeni syndrome (Li\-Fraumeni spectrum) or Fanconi anaemia
•\- Relatives of affected individuals aged 12 and over (e.g. partners, children, siblings, close relatives)
•\- Written consent from both parents or legal guardians is required for minors to take part
•\- Mother tongue German or very good knowledge of German
•\- Informed written consent to participate in the study
•\- Access to a device with internet access (e.g. computer, smart phone)

•\- Unclassified variant in the TP53 gene (VUS) (applies to LFS patients only)
•\- Missing signed informed consent
•\- Lack of capacity to give informed consent (a signed informed consent form from a legal guardian is required for children in all phases of the study)
•\- Children and adolescents under 12 years of age
•\- Insufficient knowledge of German
•\- Physical or mental impairments which make it seem impossible to participate in the study