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RecruitingLast updated: 27 February 2026

FOCUS: Assessing whether a fertility preservation decision aid helps address unmet fertility information needs when provided in addition to high-quality information in parents and child, adolescent and young adult cancer survivorsA Double Blind Randomised Controlled Trial of a Paediatric Fertility Preservation Decision Aid in Parents and Adolescents and Young Adults (CAYA) Cancer Survivors

Trial purpose

Medical clipboardSide effect and wellbeing

Tumor type

Multi-Cancer Multi-Cancer

Age

People16+

Trial acronym

FOCUS

Clinical summary

Summary

Medical advances over recent decades have increased the overall survival rates of children, adolescents and young adults diagnosed with cancer, with survival rates now exceeding 80%. The pressure points are not only at diagnosis - research has shown that cancer treatment can potentially affect fertility later in life.

Survivorship is an important time for addressing the following issues:

  • fertility status,
  • reproductive monitoring,
  • decisions about interval fertility preservation,
  • ongoing tissue storage and utilisation.

Options to preserve fertility are possible. Decision Aids (DA) have been developed to provide patients and their families with the required information to make informed reproductive health decisions that align with their values. The prevalence of fertility information needs that are unmet remains high at around 40% amongst cancer survivors. Research evaluating the effectiveness of DAs in survivorship is lacking.

This is a study for parents and Child, Adolescent and Young Adult (CAYA) cancer survivors assessing the Fertility Preservation Decision Aid (FP DA) when provided in with high-quality information.

Eligible participants will be randomly allocated (by chance) to either a control group to receive high-quality information, or a treatment group that will receive the FP DA in addition to high quality information. 

Participants will be blinded to their group allocation as they will be instructed to review information regarding fertility preservation without informing them of the type of information they are reviewing.

Conditions

This trial is treating people with parents and child, adolescent and young adult cancer survivors

Eligibility

Inclusion

Inclusion Criteria for both parents and survivors:

  • Be able to communicate in English.
  • Signed written informed consent form.

Inclusion Criteria for parents only:

• Parents/guardians of CAYA survivors who were ≤25 years (2) when diagnosed with cancer and have completed curative gonadotoxic treatment

Inclusion Criteria for survivors only

  • CAYA cancer survivors aged 16 years or over who have completed curative gonadotoxic treatment.
  • Participants can be on long-term adjuvant or endocrine therapy.
  • Participants may have achieved a pregnancy or livebirth.

Exclusion

Exclusion Criteria for both parents and survivors:

  • CAYA patients currently undergoing cancer treatment and their parents/guardians.
  • CAYA patients who are palliative and their parents/guardians
  • A family member already in the study.

Exclusion Criteria for survivors only:

• Minors who are not deemed to be mature minors as per protocol

Inclusion

  • You have the type of cancer, symptoms, or health risks that this clinical trial is focused on.
Message

Clinical trials have complex eligibility criteria, and other criteria may apply for this trial. Ask your doctor about whether this trial could be right for you.

Participating hospitals

Recruiting hospitals

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Trial Identifiers

Information on this page is partially produced from ClinicalTrials.gov *. View further details about this trial on the registry via the links below:

Trial sponsor

Murdoch Childrens Research Institute

Scientific Title

A Double Blind Randomised Controlled Trial of a Paediatric Fertility Preservation Decision Aid in Parents and Adolescents and Young Adults (CAYA) Cancer Survivors

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