Registry for Li Fraumeni and Li Fraumeni-Like Syndromes

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry collects and integrates data from patients with Li-Fraumeni and Li-Fraumeni-Like Syndromes to better understand the diseases' natural history and genetic correlations. It utilizes a web-accessible IT platform called GeDI, which complies with medical informatics standards to ensure efficient data management. The registry includes personal, clinical, genetic, and genealogical information, allowing for comprehensive analysis of the conditions. By organizing this data, the registry aims to simplify the diagnostic process and enhance research efforts.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* All patients affected by Li Fraumeni or Li Fraumeni Like syndromes

Exclusion Criteria:

* Any condition unrelated to Li Fraumeni or Li Fraumeni Like syndromes

Where it's running

• Irccs Istituto Ortopedico Rizzoli
  Bologna, Emilia-Romagna, Italy Recruiting
• IRCCS Istituto Ortopedico Rizzoli
  Bologna, Emilia-Romagna, Italy Enrolling by invitation

Study contacts

• Principal investigator: Luca Sangiorgi, MSc — Istituto Ortopedico Rizzoli
• Study coordinator: Marina Mordenti, PhD
• Email: registri.malattierare@ior.it
• Phone: +39-0516366062

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Biobank for patients with Li-Fraumeni Syndrome and TP53 mutations

  This study is collecting health information and samples from people with Li-Fraumeni Syndrome and TP53 mutations, as well as their family members, to see how their genes affect cancer risk and to find better ways to screen for and treat these cancers.

  Recruiting at 2 sites Abramson Cancer Center at Penn Medicine · Philadelphia, Pennsylvania and 1 other locations · NCT04367246

• Using video capsules to examine patients with Lynch Syndrome

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• Understanding genetic causes of neuroendocrine tumors in Mexican patients

  This study is trying to find out the genetic changes that cause neuroendocrine tumors in Mexican patients to help develop better treatments.

  Recruiting at 3 sites Universidad Nacional Autonoma de Mexico · Mexico City, Mexico City and 2 other locations · NCT06523582

• Using arsenic trioxide with chemotherapy to treat pediatric cancer with p53 mutations

  This study is testing if adding arsenic trioxide to chemotherapy can help children with Li-Fraumeni syndrome and p53 mutations fight their cancer more safely.

  Recruiting Phase 2 Sun Yat-Sen Memorial Hospital of Sun Yat-Sen University · Guangzhou, Guangdong · NCT06088030

• Evaluating willingness to participate in genetic counseling comparison

  This study is trying to see how willing people with Li-Fraumeni syndrome are to join a future trial comparing regular genetic counseling to personalized genetic counseling.

  Recruiting M.D. Anderson Cancer Center · Houston, Texas · NCT05126810

• Understanding Li-Fraumeni Syndrome and TP53 Variants

  This study is trying to understand cancer risks in people with Li-Fraumeni Syndrome or TP53 gene changes to help improve prevention and treatment options.

  Recruiting at 3 sites Dana-Farber Cancer Institute · Boston, Massachusetts and 2 other locations · NCT04541654

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.