Papers & Research Literature Archives - Page 3 of 3

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care
Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care

Papers & Research Literature, Psychosocial Issues, Reference

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care

Adolescents and young adults (AYAs) reported family communication difficulties related to LFS that negatively affected their emotional well-being. Stress related to LFS and major life changes both contributed to and were worsened by these family challenges. Clinicians can support AYAs with LFS by asking about family communication, responding with empathy, offering resources to help with

By LFS Association|2026-01-30T16:12:12-05:00November 30th, 2022|Papers & Research Literature, Psychosocial Issues, Reference|0 Comments

Breastfeeding reduces the risk of breast cancer
Breastfeeding reduces the risk of breast cancer

Papers & Research Literature

Breastfeeding reduces the risk of breast cancer

Although the reduced risk of breast cancer with breastfeeding has not been studied with Li-Fraumeni syndrome, in particular, this review of breast feeding and the reduced risk of breast cancer is cause for further consideration. See more here - Breastfeeding reduces the risk of breast cancer: A call for action in high-income countries with low

By Holly Fraumeni|2026-01-15T11:43:17-05:00September 26th, 2022|Papers & Research Literature|0 Comments

Psychological Impact of TP53-Variant-Carrier Newborns and Counselling on Mothers: A Pediatric Surveillance Cohort
Psychological Impact of TP53-Variant-Carrier Newborns and Counselling on Mothers: A Pediatric Surveillance Cohort

Papers & Research Literature, Psychosocial Issues, Reference

Psychological Impact of TP53-Variant-Carrier Newborns and Counselling on Mothers: A Pediatric Surveillance Cohort

This study examined anxiety and depression in mothers of newborns carrying the TP53 p.R337H variant in southern Brazil. Mothers of carriers showed higher anxiety shortly after genetic testing, but anxiety decreased within four months. Depression levels did not significantly change. Ongoing psychological support may be needed for mothers with existing mental health concerns. (2022)

By LFS Association|2026-01-30T15:50:40-05:00January 30th, 2022|Papers & Research Literature, Psychosocial Issues, Reference|0 Comments

Li-Fraumeni syndrome: not a straightforward diagnosis anymore
Li-Fraumeni syndrome: not a straightforward diagnosis anymore

Papers & Research Literature

Li-Fraumeni syndrome: not a straightforward diagnosis anymore

With advances in genetic testing, researchers and providers have been facing challenges in interpreting the pathogenic variants of TP53. Li-Fraumeni syndrome: not a straightforward diagnosis anymore—the interpretation of pathogenic variants of low allele frequency and the differences between germline PVs, mosaicism, and clonal hematopoiesis. (2019)

By LFS Association|2026-01-15T11:31:33-05:00January 1st, 2019|Papers & Research Literature|0 Comments

The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

Papers & Research Literature, Psychosocial Issues

The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

Data analysis indicated that the perceived benefits of screening included early detection, increased peace of mind, centralized care, empowerment through knowledge, and a sense that screening made living with LFS more manageable. Reported drawbacks included logistical challenges, difficulty navigating the healthcare system, the physically and emotionally taxing nature of screening, and strong negative emotional responses

By LFS Association|2026-01-30T15:31:27-05:00September 30th, 2017|Papers & Research Literature, Psychosocial Issues|0 Comments

Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient
Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient

LFS News, Papers & Research Literature

Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient

Published by AACR in 2017, this publication was written by some of the invaluable members of LFSA's Genetic Counseling Advisory Group. In this article, the authors present a genetic counseling framework for oncology professionals. They discuss key points of entry and offer recommendations on when and how to provide initial and follow-up genetic counseling

By LFS Association|2025-03-13T16:17:06-04:00July 2nd, 2017|LFS News, Papers & Research Literature|0 Comments

Parent decision-making around the genetic testing of children for germline TP53 mutations
Parent decision-making around the genetic testing of children for germline TP53 mutations

Genetic Testing, Papers & Research Literature, Psychosocial Issues, Reference

Parent decision-making around the genetic testing of children for germline TP53 mutations

Despite limited empirical evidence on the benefits and risks of TP53 testing in childhood, most parents in this study readily chose testing and identified multiple benefits. The authors conclude that, within the context of a clinical Li-Fraumeni syndrome diagnosis, parents should continue to be offered TP53 testing for their children, receive clear counseling on potential

By LFS Association|2026-01-30T16:01:34-05:00September 14th, 2014|Genetic Testing, Papers & Research Literature, Psychosocial Issues, Reference|0 Comments

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)
Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)

LFS News, Papers & Research Literature, Reference

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)

On November 2, 2010, the National Cancer Institute convened a workshop at the National Institutes of Health in Bethesda, Maryland, bringing together clinicians and scientists, as well as individuals from families with LFS, to review the state of the science, address clinical management issues, stimulate collaborative research, and engage the LFS family community. This

By LFS Association|2026-01-30T16:47:42-05:00October 20th, 2012|LFS News, Papers & Research Literature, Reference|0 Comments

Monograph on Li-Fraumeni Syndrome
Monograph on Li-Fraumeni Syndrome

Papers & Research Literature, Reference

Monograph on Li-Fraumeni Syndrome

Monograph on Li-Fraumeni syndrome written by Dr. David Malkin and edited by Arnold Levine: In 1969, Li and Fraumeni described a notable cancer predisposition syndrome. Using a classic epidemiological approach, they conducted a retrospective review of 280 medical charts and 418 death certificates of children diagnosed with rhabdomyosarcoma in the U.S. between 1960 and 1964.

By LFS Association|2025-03-12T16:11:46-04:00April 2nd, 2011|Papers & Research Literature, Reference|0 Comments

The history of p53
The history of p53

Papers & Research Literature, Reference

The history of p53

By Thierry Soussi The history of p53 and the different interpretations of its role in cells highlight how scientific paradigms can shape research fields. It also provides valuable lessons for young scientists looking for an engaging and impactful research topic. (October 8, 2010)

By LFS Association|2025-09-17T13:24:57-04:00October 8th, 2010|Papers & Research Literature, Reference|0 Comments

Devoted to a world without inherited cancer

Africa

Canada

France

Germany

India

Italy

Japan

Latin America

Netherlands

Saudi Arabia

Singapore

Sweden

Papers & Research Literature

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care

Breastfeeding reduces the risk of breast cancer

Psychological Impact of TP53-Variant-Carrier Newborns and Counselling on Mothers: A Pediatric Surveillance Cohort

Li-Fraumeni syndrome: not a straightforward diagnosis anymore

The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient

Parent decision-making around the genetic testing of children for germline TP53 mutations

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)

Monograph on Li-Fraumeni Syndrome

The history of p53

CONTACT US

FOLLOW US ON SOCIAL MEDIA