Get involved in research
Below are current research opportunities for you to be directly involved in!
Please note we are highlighting the opportunity to take part in a research project but it is an individual’s own decision whether they do so. If they proceed it is their responsibility to ensure they have all the relevant information to make an informed decision, and that no liability is accepted by the Childhood Eye Cancer Trust.
WeCHope new research
WeCHope recently hosted webinar about new retinoblastoma research that you are able to get involved in! Dr. Andrew Stacey and Dr. Debarshi Mustafi have developed a groundbreaking blood test that identifies which parent’s copy of the RB1 gene mutation was passed on – offering new insights into disease severity and treatment options.
This is early stage research and not yet clinically available. If anyone would like to express an interest in taking part in the research going forward they can sign up using the link below. (over 18s, or the adult caregiver if the patient is under 18).
The Hospital for SickChildren (SickKids, Toronto) is developing asurvey called FACE-Q
The team at The Hospital for Sick Children (SickKids) is developing a survey called FACE-Q:Ophthalmology to understand how retinoblastoma affects appearance satisfaction. Parents, this is a great opportunity for your child to share their thoughts in a safe and confidential way.
Who can participate?
Retinoblastoma survivors who are 8 years old or older.
What is involved?
- One questionnaire which will ask you about yourself and your eye condition.
- This will be done twice, one week apart, and take just 10-15 minutes each time.
Deadline for sign ups: End of August 2025
New survey from the North Star Coalition
Five charities, including YoungLives, CCLG and Ellen McArthur amongst others, have joined together to improve the long-term well-being of children and young people with cancer. The first focus is mental health – if you’ve got lived experience of cancer, or are a professional who works with children and young people with cancer, please fill in the survey to help create real, lasting change.