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

Recruiting

• Conditions: i-Fraumeni-SyndromPathogenic TP53 germline variantFanconi AnemiaORPHA:84ORPHA:524; C97; Z80; D61.0; Malignant neoplasms of independent (primary) multiple sites; Family history of malignant neoplasm; Constitutional aplastic anaemia

• Registration Number: DRKS00034066
• Lead Sponsor: niversitätsklinikum Würzburg

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2024-04-18
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 200

Inclusion Criteria

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)

Exclusion Criteria

- 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

Study & Design

• Study Type: observational
• Study Design: Not specified