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

niversitätsklinikum Würzburg0 个研究点目标入组 200 人开始时间: 2024年4月18日最近更新: 2024年8月19日

适应症

试验速览

暂无简介。

•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

发起方

niversitätsklinikum Würzburg