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REDMAPP study: RElapse Decision MAking Parent Process
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This research has now concluded thank you to everyone who contributed.
Supporting decision-making by parents when their child has relapsed neuroblastoma
Neuroblastoma is a rare type of cancer that mostly affects babies and young children. Parents must make many difficult decisions over months or years depending on how their child responds to neuroblastomatreatment. This can cause worry and distress.
Relapse neuroblastoma has many treatment options available but no standard treatment guidelines. This means parents are involved in making repeated treatment decisions depending on their child’s response to treatment.
The REDMAPP study aims to develop a decision aid to support parents when their child has relapsed neuroblastoma, by gaining a greater understanding of how parents make a series of repeated treatment-related decisions.
REDMAPP is an acronym for RElapse Decision MAking Parent Process.
Parents who are making these decisions can participate in the research by being interviewed about their decision-making experiences. These interviews aim to understand how parents make treatment related decisions and how their decision-making may change over time (if they have made more than one treatment decision).
This information will be used to develop a decision aid for parents. The decision aid will then be tested to see how helpful it is in supporting parents who are making repeated treatment decisions.
The REDMAPP Patient and Public Involvement Group
The REDMAPP study already has an established Patient Public Involvement Group which is advising researchers in this study. For more information please contact Helen Pearson [email protected]- or visit:
The study is funded by National Institute for Health Research through a Clinical Doctoral Research Fellowship.
This project has also received a PPI grant from the NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.
Supporting decision-making by parents when their child has relapsed neuroblastoma
Neuroblastoma is a rare type of cancer that mostly affects babies and young children. Parents must make many difficult decisions over months or years depending on how their child responds to neuroblastomatreatment. This can cause worry and distress.
Relapse neuroblastoma has many treatment options available but no standard treatment guidelines. This means parents are involved in making repeated treatment decisions depending on their child’s response to treatment.
The REDMAPP study aims to develop a decision aid to support parents when their child has relapsed neuroblastoma, by gaining a greater understanding of how parents make a series of repeated treatment-related decisions.
REDMAPP is an acronym for RElapse Decision MAking Parent Process.
Parents who are making these decisions can participate in the research by being interviewed about their decision-making experiences. These interviews aim to understand how parents make treatment related decisions and how their decision-making may change over time (if they have made more than one treatment decision).
This information will be used to develop a decision aid for parents. The decision aid will then be tested to see how helpful it is in supporting parents who are making repeated treatment decisions.
The REDMAPP Patient and Public Involvement Group
The REDMAPP study already has an established Patient Public Involvement Group which is advising researchers in this study. For more information please contact Helen Pearson [email protected]- or visit:
What is the difference between a registering for the platform and subscribing for updates to a project?
A registered user is someone who has completed the site sign up form
A project subscriber has signed up for email updates on a project and only provided an email address when they click on the STAY INFORMED Subscribe for project updates button
REDMAPP study: RElapse Decision MAking Parent Process is currently at this stage
Phase one of the study involves:
1) Literature review of how parents make treatment related decision when their child has a poor prognosis childhood cancer
2) Interviews with parents who are making treatment related decisions for their child who has relapsed neuroblastoma. These interviews are to understand how parents make treatment decisions and whether there decision-making changes over time with the more decisions they make.
Phase 1 opened in February 2020 and is anticipated to close early 2022.
Phase 2
this is an upcoming stage for REDMAPP study: RElapse Decision MAking Parent Process
Development of the Decision Aid. This will be in collaboration with a steering group consisting of parents and healthcare professionals
Once developed the Decision Aid will be tested by parents and healthcare professionals to see whether it is appropriate and useable.
Phase 2 is anticipated to open early 2022 and complete late 2023.
