FAQs

The study is open to recruitment either through Paediatric Oncology Treatment Centres in the UK that are participating 

or 

parents can self-refer directly to the study via email ([email protected]) or any of the study social media platforms (Twitter & Instagram: @redmapp_study, Facebook: REDMAPP Research Study)

• Parents of a child who is receiving treatment for relapsed neuroblastoma
• Child is under 12 years of age at relapse
• Parents have made a recent decision regarding treatment
• Parents can be re-interviewed if they make more than one treatment decision during the time phase 1 is open
• Both parents can participate in the study 
• Parents are able to converse in English

The REDMAPP study has a Patient Public Involvement (PPI) group.  This consists of mothers, fathers and grandparents who have experienced having a child treated for relapsed neuroblastoma. 

This group was developed from the beginning of the study.  They have been involved in designing the study information sheet, consent form, interview questions and recruitment strategy.  Helen (researcher) and the group co-designed the REDMAPP study website (www.redmappstudy.co.uk).  

The group meet twice a year to discuss aspects of the study as required and provide ongoing advice and support via email/phone in between meetings.  For more information on the PPI group involvement so far and ongoing plans visit: https://www.redmappstudy.co.uk/patient-and-public-involvement/

If you are interested in being involved in the PPI group please contact Helen ([email protected])

Consultant experts in neuroblastoma have been involved in the study development.  They have given guidance on recruitment strategies for children's cancer treatment centers in the UK and supported opportunities to present the study to clinicians at meetings and conferences.

The consultant experts involved in this study can be found here: https://www.redmappstudy.co.uk/clinical-steering-group/

When the decision aid is ready to be developed there will be a steering committee consisting of parents and healthcare professionals.  This is to ensure the decision aid is relevant and applicable to parents as well as engaging healthcare professionals in how the decision aid might be used in clinical practice. Furthermore parents and healthcare professionals will test the decision aid once it is developed to check its use and accessibility. 

This again will support healthcare professional engagement and awareness. 

There will be educational workshops for healthcare professionals nationally to understand how the decision aid works as it might be that parents bring this with them to their child's consultation.  It will be important that healthcare professionals have awareness of how the decision aid was developed and how it can be used to support parents when they are making treatment decisions.

If you are interested in receiving updates on the study progress please subscribe to the page.  This is the "STAY INFORMED' section on the right had side of the page.  

Updates will be via email at least twice a year.  If you want to know more in between these email updates please contact Helen ([email protected])