Pre-Implementation Assessment of the Acceptability of Using Circulating microRNAs for Follow-Up of Malignant Germ-Cell Tumors

Fern, Lorna A; Greenwood, Michelle; Smith, S.; Brand, S.; Stark, Daniel P.; Murray, Matthew J.

doi:10.1016/j.clgc.2021.03.005

Cited by 4 publications

(2 citation statements)

References 30 publications

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“…We must continue to consider ways of increasing the accessibility and attractiveness of our PPI exercises in a bid to include underrepresented groups such as males. One tested method is for the team to attend existing groups where males attend such as testicular cancer support groups [ 23 ]. However, our workshops were held when most NHS institutions had restrictions on face-to-face meetings.…”

Section: Discussionmentioning

confidence: 99%

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers

Hughes,

Fern,

Polanco

et al. 2023

Res Involv Engagem

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Background In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service delivery, and with special permissions used for research. The use of routinely collected health data in research is an advancing field with huge potential benefit, particularly in CYP with cancer where case numbers are small and the impact across the life course can be significant. Patient and public involvement (PPI) exercise aims: Identify current barriers to trust relating to the use of healthcare data for research. Determine ways to increase public and patient confidence in the use of healthcare data in research. Define areas of research importance to CYP and their carers using healthcare data. Methods Young people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis. Results Ten young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use. Conclusions In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise.

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Section: Discussionmentioning

confidence: 99%

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers

Hughes,

Fern,

Polanco

et al. 2023

Res Involv Engagem

Self Cite

View full text Add to dashboard Cite

show abstract

“…For instance, miRNAs are implicated in numerous types of paediatric cancer, including childhood germ cell tumours [ 31 ]. Hence, profiling miRNA expression levels in cancer can become a tool for diagnosis and prognosis or for identification of therapeutic targets [ 21 , 32 , 33 ].…”

Section: Introductionmentioning

confidence: 99%

Circulating microRNA profiles in Wilms tumour (WT): A systematic review and meta-analysis of diagnostic test accuracy

Benlhachemi,

Abouqal,

Coleman

et al. 2023

Non-coding RNA Research

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A Multi-institutional Pooled Analysis Demonstrates That Circulating miR-371a-3p Alone is Sufficient for Testicular Malignant Germ Cell Tumor Diagnosis

Piao

Lafin

Scarpini

et al. 2021

Clinical Genitourinary Cancer

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Pre-Implementation Assessment of the Acceptability of Using Circulating microRNAs for Follow-Up of Malignant Germ-Cell Tumors

Cited by 4 publications

References 30 publications

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers

Circulating microRNA profiles in Wilms tumour (WT): A systematic review and meta-analysis of diagnostic test accuracy

A Multi-institutional Pooled Analysis Demonstrates That Circulating miR-371a-3p Alone is Sufficient for Testicular Malignant Germ Cell Tumor Diagnosis

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