Understanding the Unmet Needs of Young Female Mutation Carriers Living With Cancer Risk

Oncologists’ perspectives of telephone genetic counseling to facilitate germline BRCA1/2 testing for their patients with high-grade serous ovarian cancer

P Hemming, R Kaur, B Meiser, J McKinley, MA Young, PA James, LE Forrest

2021-07-01

Poly ADP ribose polymerase (PARP) inhibitors offer a survival advantage to women with high-grade serous ovarian cancer who have a ..

Finding the five-year window: A qualitative study examining young women's decision-making and experience of using tamoxifen to reduce BRCA1/2 breast cancer risk

LE Forrest, R Forbes Shepherd, MA Young, LA Keogh, PA James

2021-02-01

Objective: Tamoxifen has been demonstrated to reduce breast cancer risk in high-risk, premenopausal women. Yet, very few young wom..

Social media usage in family communication about genetic information: ‘I no longer speak with my sister but she needed to know’

S Leighton, LE Forrest, MA Young, MB Delatycki, E Lynch

2021-02-01

The use of social media has become a ubiquitous form of communication. Little is known about whether social media is used in famil..

“I need to know if I’m going to die young”: Adolescent and young adult experiences of genetic testing for Li–Fraumeni syndrome

R Forbes Shepherd, A Werner-Lin, LA Keogh, MB Delatycki, LE Forrest

2021-01-01

Purpose: This study explored the genetic testing experiences of adolescents and young adults (AYAs; aged 15–39 years) with, or at ..

Health professionals’ practice for young people with, or at risk of, Li–Fraumeni syndrome: An Australasian survey

R Forbes Shepherd, LA Keogh, A Werner-Lin, MB Delatycki, LE Forrest

2020-10-01

Li–Fraumeni syndrome (LFS), a rare cancer syndrome caused by pathogenic germline variants in TP53, has serious implications for ad..

Parental experiences and genetic counsellor roles in Pierre Robin sequence

R Sandow, NM Kilpatrick, TY Tan, S Raj, LE Forrest

2020-10-01

Pierre Robin sequence (PRS) is a craniofacial abnormality comprising micrognathia, glossoptosis and airway obstruction, which can ..

Evaluation of telephone genetic counselling to facilitate germline BRCA1/2 testing in women with high-grade serous ovarian cancer

E Tutty, L Petelin, J McKinley, MA Young, B Meiser, VM Rasmussen, R Forbes Shepherd, PA James, LE Forrest

2019-08-01

Systemic healthcare issues and geographical challenges restrict women’s access to BRCA1/2 testing to inform the use of tailored tr..

Decision-making and experience of tamoxifen as chemoprevention to manage breast cancer risk for young women with a BRCA1/2 mutation

LE Forrest, R Forbes Shepherd, M Young, LA Keogh, PA James

2019-07-01

A natural progression": Australian women's attitudes about an individualized breast screening model

J Lippey, LA Keogh, G Bruce Mann, IG Campbell, LE Forrest

2019-06-01

Individualized screening is our logical next step to improve population breast cancer screening in Australia. To explore breast sc..

High-risk women’s risk perception after receiving personalized polygenic breast cancer risk information

LE Forrest, SD Sawyer, N Hallowell, PA James, MA Young

2019-04-04

Evidence is accumulating of the clinical utility of single nucleotide polymorphisms to effectively stratify risk of breast cancer...

Men's experiences of recontact about a potential increased risk of prostate cancer due to Lynch Syndrome: “Just another straw on the stack”

V Rasmussen, R Forbes Shepherd, LE Forrest, PA James, MA Young

2019-01-01

The practice of recontacting patients to provide new health information is becoming increasingly common in clinical genetics, desp..

A systematic review of how young people live with inherited disease: What can we learn for li-fraumeni syndrome?

R Forbes Shepherd, A Lewis, LA Keogh, A Werner-Lin, MB Delatycki, LE Forrest

2018-10-01

Purpose: Li-Fraumeni syndrome (LFS), a multiorgan cancer predisposition caused by germline TP53 mutations, confers significant can..

Making Sense of SNPs: Women’s Understanding and Experiences of Receiving a Personalized Profile of Their Breast Cancer Risks

MA Young, LE Forrest, VM Rasmussen, P James, G Mitchell, SD Sawyer, K Reeve, N Hallowell

2018-06-01

Genome wide association studies have identified a number of common genetic variants - single nucleotide polymorphisms (SNPs) – tha..

A comparison of Australian and French families affected by sarcoma: Perceptions of genetics and incidental findings

V Rasmussen, LE Forrest, M Rogasik, M Girodet, P Meeus, MP Sunyach, JY Blay, O Bally, M Brahmi, ML Ballinger, E Niedermayr, DM Thomas, J Halliday, P James, I Ray-Coquard, MA Young

2018-01-01

Aim: To compare Australian and French perceptions of genetics and preferences regarding the return of incidental findings. Methods..

Consumer attitudes towards the establishment of a national Australian familial cancer research database by the Inherited Cancer Connect (ICCon) Partnership

L Forrest, G Mitchell, L Thrupp, L Petelin, K Richardson, L Mascarenhas, MA Young

2018-01-01

Clinical genetics units hold large amounts of information which could be utilised to benefit patients and their families. In Austr..

Clinically significant germline mutations in cancer-causing genes identified through research studies should be offered to research participants by genetic counselors

LE Forrest, MA Young

2016-03-20

Connecting patients, researchers and clinical genetics services: The experiences of participants in the Australian ovarian cancer study (AOCS)

A Crook, L Plunkett, LE Forrest, N Hallowell, S Wake, K Alsop, M Gleeson, D Bowtell, G Mitchell, MA Young

2015-02-20

Population-based genetic research may produce information that has clinical implications for participants and their family. Resear..