Listed below are current LFS clinical trials, LFS research studies, LFS patient surveillance programs and other opportunities to assist in research:
National Cancer Institute
Coming soon! The NCI is getting closer to opening the metformin trial for recruitment in the United States. Dr. Payal Khincha of the NCI’s Division of Cancer Epidemiology and Genetics (Clinical Genetics Branch), and co-chair of the LFSA – India chapter, is the leading developer of the phase 2 clinical trial for metformin for participants with LFS in North America. Follow the LFS Association for information detailing how individuals can participate in the latter part of this year. Read more here.
Ongoing! Under the leadership of Dr. Payal Khincha, the NCI is still welcoming participation in their ongoing longitudinal family study. Read more about their accomplishments in the Division of Cancer Epidemiology and Genetics March 2022 news update. Find out how you can contribute to their study here.
LiFT Up Study
Researchers at the Dana-Farber Cancer Institute and the City of Hope are seeking international participation to learn more about LFS. Learn how you can help, here: LiFT Up Study or LiFT Up Study Flyer
October 2020: Study of Patient Attitudes Towards Genome-Editing Technology
Emma Oborne is a postgraduate student at Cardiff University (United Kingdom) currently studying for a Master’s degree in Genetic & Genomic Counseling. As part of her dissertation, she will be researching the thoughts, feelings, and knowledge of those who are affected by genetic conditions regarding genome-editing technology. Emma would like to interview volunteers of all ages who have inherited genetic conditions, including those living with LFS. International participation is encouraged! Please see here for more information.
October 2020: Parent’s of Children with LFS, Children’s Book Study
The LFS Association’s Genetic Counseling Advisory Group are creating a children’s book about Li-Fraumeni syndrome (LFS) and would like to hear about what you and your child think!
The GCAG has a draft copy of the book, “LFS & Living My Best.” They are asking families to read and answer questions about as a part of a research study. Your child may participate in the study if:
- They are 8-13 years old
- Speak English
- Either have LFS or have a close family member with LFS (i.e. their parent or sibling has LFS)
If your child would like to participate, you and your child will be asked to do the following together:
- Read “LFS & Living My Best.” While reading times vary, this may take about 45 minutes, including time for your child to do the activities in the book.
- Answer a short 10 minute survey after reading the book.
- Participate in a 10-20 minute phone interview (to be scheduled after filling out the survey).
Further details about the study can be found here: Children’s Book Study
If you would like further information, please contact researchers Isabella Brink at firstname.lastname@example.org or (541) 490-6908 and Emily Quinn at Emily_Quinn@kgi.edu or (909) 607-6474.
Garvan Institute of Medical Research
The Kinghorn Cancer Centre and Cancer Division
- The Surveillance study in Multi-Organ Cancer prone syndromes (SMOC)
ANZCTR Trial ID ACTRN12613000987763
- The International Sarcoma Kindred Study
ANZCTR Trial ID ACTRN12610000120077
Peter MacCallum Cancer Centre
Young People with Li-Fraumeni Syndrome: are their psychosocial needs being met? This study aims to understand how young people experience Li-Fraumeni syndrome on a day-to-day basis, and what their age-specific support needs are. We aim to make recommendations for the development of psychosocial model of support specifically for young people with or at risk of LFS. Learn more here. Contact:
Mr Rowan Forbes Shepherd
Qualitative Health Research
Phone: 03 8559 6194
St. Jude Children’s Research Hospital
- Familial Investigations of Childhood Cancer Predisposition
ClinicalTrials.gov Identifier: NCT03050268Last verified: August 2017
- SJFAMILY: Study of Cancer in Families
Dana-Farber Cancer Institute
University of Texas’s MD Anderson Cancer Center
October 2013 Start Date
National Cancer Institute’s Center for Cancer Research, Bethesda, Maryland
- A Pilot Study of Metformin in Patients with Li-Fraumeni Syndrome
ClinicalTrials.gov Identifier: NCT0198152Estimated completion date September 2015 (final data collection for primary outcome measure)
October 2012 Start Date
Institute of Cancer Research, Surrey, United Kingdom
- Magnetic Resonance Imaging Screening in Li Fraumeni Syndrome (SIGNIFY)
ClinicalTrials.gov Identifier: NCT01737255
- UK Clinical Research Network Study Portfolio (close date December 2015)
September 2011 Start Date
National Institutes of Health Clinical Center, Bethesda, Maryland
- Clinical, Epidemiologic, and Genetic Studies of Li-Fraumeni Syndrome
ClinicalTrials.gov Identifier: NCT01443468
- Li-Fraumeni Syndrome Study Newsletter (Summer 2014 issue)
September 2011 Start Date
Institut Gustave Roussy, Villejuif, France
- LIFScreen – Evaluation of Whole Body MRI for Early Detection of Cancers in Subjects with p53 Mutations
ClinicalTrials.gov Identifier: NCT01464086Estimated completion date February 2015 (final data collection for primary outcome measure)
May 2011 Start Date
University of Utah’s Cancer Genetics Study
- Univ of Utah Cancer Genetics Study Information Sheet (actively recruiting with no closing date)
November 2006 Start Date
- Role of p53 Gene in Metabolism Regulation in Patients with Li-Fraumeni Syndrome
ClinicalTrials.gov Identifier: NCT00406445
The trials listing will be updated periodically. See how you can participate and potentially benefit.