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).
Help design new research, and earn £42.50!
Monday 23rd June
6.30pm – 8pm online
Researchers at the University of Manchester are looking for parents of children with heritable retinoblastoma, and young adults aged 16-24 with heritable retinoblastoma to take part in an online session to help them design a new research project. You do not have to have had any previous experience of taking part in research: they just want to hear your views and opinions on issues around using patients’ medical data or samples in research, and what needs to be considered when planning to do so.
Deadline for sign ups: 18th June 2025
The Hospital for SickChildren (SickKids) 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