Have your say on research

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A CHECT-funded research study, called the Eloise Patterson Project, is being undertaken by the Retinoblastoma Genetics Unit at Barts Health NHS Trust.

The Unit is asking for patients and parents of children affected by retinoblastoma to take part in a short survey about the research. This is to ensure appropriate patient / public engagement and consultation.

The two minute survey gives you the chance to tell the researchers what you think about this study and the use of patient information where it is not possible to get individual consent.

Aims of the research

The Retinoblastoma Genetics Unit at Barts Health is planning a study using data from retinoblastoma (Rb) patients with heritable or genetic cancer (the type where other family members may be affected). Patients with this type of Rb have a small chance of developing other cancers.

As part of the project, records at the Royal London Hospital and Great Ormond Street Hospital will be studied alongside records previously held by the Childhood Cancer Research Group at Oxford.

This study wants to look at any links between the different types of genetic changes in Rb, and other kinds of cancer that can follow later. Do some types of change increase or decrease the chance of getting other cancers? The researchers hope that this will give doctors more information when working out the chance of other cancers occurring. This could lead to earlier detection and treatment of these cancers.

To do this, the research team needs to use information about patients with Rb – such as name, birthdate, and NHS number. This will let them match information about a person’s Rb gene change to that on any later cancers that they may have had.

The personal data will be used only for a short time; once the match is made then the personal data will be removed. It will then not be possible to identify the patients in the study. Ethical approval has been given for the use of personal identifiable data in this study, but because the team will be using data going back over many years they cannot get individual consent from everyone whose data they wish to use.

If you do not want your/your child’s data to be used in this work then you can get in touch with the team to let them know. Contact Zerrin Onadim (Head of Retinoblastoma Genetics Unit) on 020 3246 0265 / zerrin.onadim@bartshealth.nhs.uk. Your details will not then be used for this work.

If you would like to talk to anyone about heritable Rb and / or second cancers, you can contact either Dr Elisabeth Rosser (020 7762 6856 / Elisabeth.Rosser@gosh.nhs.uk) or your support workers at the Childhood Eye Cancer Trust: either Lesley Geen (020 7377 5578 / lesley.geen@chect.org.uk) or Julia Morris (0121 708 0583 / julia.morris@chect.org.uk).

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