Why is the REDMAPP study so important for families of children diagnosed with stage 4 Neuroblastoma?

Follow the link to listen to an informal chat between Helen and Carol, a valued member of the patient public involvement group: youtube.com/watch?v=QWUf53…

Neuroblastoma is a rare cancer that affects children. It mostly affects children under the age of 5 years, but can also affect older children, teens and adults in rare cases. Around 100 children between the ages of 0-14 years are diagnosed with neuroblastoma each year in the UK.

We are reaching out to the Neuroblastoma community. We are creating a website so we can help support future parents when faced with treatment-related decisions. Please help share our posts so once the website is launched, as many families as possible can access it.

During the treatment, parents are faced with the difficult process of making a series of decisions & often will have to revisit these decisions based on their child’s response to treatment. We are aiming to develop an intervention to support parents in the future.

Your child will undergo many different tests in order to confirm whether your child has cancer, what type and stage, and which treatment will be best. The diagnosis of neuroblastoma is usually confirmed by tests at a specialist treatment centre.

When your child is diagnosed with Neuroblastoma it can be incredibly difficult to digest. This booklet aims to answer some questions you may have:

neuroblastoma.org.uk/neuroblastoma-…

The REDMAPP study was created to explore parent treatment decision-making in relapse and refractory neuroblastoma and how this may change over time.

To learn more, please visit: youtube.com/watch?v=H27rR3…

We are creating a website so we can help support future parents when faced with treatment-related decisions. Your voice is invaluable to us and to support others in the Neuroblastoma community.

For far too long there has been a lack of support and factual information available to parents when making treatment-related decisions. The Neuroblastoma community UK is small (but mighty!) and we are trying to help as many parents as possible.

We are reaching out to the Neuroblastoma community. We are creating a website so we can help support future parents when faced with treatment-related decisions. Please help share our posts so once the website is launched, as many families as possible can access it.

Peer to peer support is invaluable. We are in the process of creating a website so parents can hear about other Neuroblastoma parents experiences when making treatment-related decisions for their child with relapsed and refractory neuroblastoma.

Nothing resonates more than listening to someone speak about their experiences who has walked in your shoes. Peer-to-peer support is invaluable and that is why we aim to include it in our website which will support parents and caregivers making treatment-related decisions.

After seeing parents' tough choices, I realised more must be done for families. This study aims to fill the support gap for parents dealing with relapsed/refractory neuroblastoma decisions. The dedicated research team is here to make a difference in the tough.

The diagnosis of neuroblastoma is usually confirmed by tests at a specialist treatment centre which have expertise in managing and treating all childhood cancers. Your child will undergo many different tests to determine what type and stage of cancer they have.

The Neuroblastoma community UK is small (but mighty!) and we are trying to reach as many parents as possible to give them the opportunity Please help us achieve that by sharing posts, and tagging families that are affected by Neuroblastoma.

Following the review of the data analysed in phase one, the development of an intervention to aid parents and their decision-making is well underway. The intervention will be developed following the Medical Research Council Developing Complex Interventions Framework.

For relapsed & refractory neuroblastoma patients, there is no standard treatment protocol but many treatment options available. Parents are faced with the difficult process of making a series of decisions. We are aiming to develop an intervention to support parents in the future.

The Neuroblastoma community UK is small and we are trying to reach as many parents as possible to give them the opportunity to take part in the study and help other families. Please help us achieve that by sharing posts, and tagging families that are affected by Neuroblastoma. 🥰

Neuroblastoma most commonly occurs in the adrenal glands above the kidneys or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis. It is often not detected until it has spread due to a lack of early symptoms.

We recognise that parents will likely make repeated treatment decisions throughout their child’s illness. Our mission is to ensure parents feel fully supported in the decision-making process.

redmappstudy.co.uk