Family Research Advisory Group (FRAG)
We keep families at the centre of our research
At Abbie's Army, we engage on behalf of the research community with families affected by DIPG/DMG through our Family Research Advisory Group.
This is an imperative cornerstone of the commitment to ensure that any research reviewed in this field is informed by the lived experiences of those directly impacted.
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Through these groups, families contribute in various ways, including:
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Providing input on research priorities;
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Reviewing patient information materials;
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Offering insights on the practicalities of participating in clinical trials; and
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Sharing perspectives that help shape research methodologies.
The Importance of Public Involvement in Research
Our Family Research Advisory Group brings together parents and carers of children with DIPG/DMG, creating a platform where their unique insights and perspectives play a crucial role in shaping research directions.
This collaborative approach allows us to:
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Enhance the quality and relevance of research by incorporating real-world experiences.
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Ensure that research priorities align with the needs of the DIPG/DMG community.
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Improve the ethical standards and participant experience in clinical trials.
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Bridge the gap between researchers and families affected by DIPG/DMG.
Patient and Public Involvement and Engagement (PPIe)
This initiative is part of our broader commitment to Patient and Public Involvement and Engagement (PPIe), which is now recognised as a vital component in medical research.
Abbie's Army takes on several 'patient voice' roles on funding applications from research groups, and within Trials Management Groups for clinical studies in DIPG and DMG.
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By facilitating within advisory groups, we ensure that the voices of families remain central to all research efforts in the field of DIPG/DMG.
Have you been affected by DIPG? We would like to hear from you
Together, we can ensure that our research truly reflects and serves the needs of the DIPG/DMG community. Contact us today to learn more and become a part of this important initiative. Together, we can make a difference.
Volunteer to take part in a DIPG/DMG families Research Advisory Group. Your voice can make a significant difference. If you are interested in joining FRAG and contributing your perspectives to shape impactful research, please get in touch with us.
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