KAND researchers at the Murdoch Children’s Research Institute, led by Dr. Simranpreet Kaur, have taken a commitment to patient-centered research to heart. See how in their most recent impact update.
At KIF1A.ORG we take pride in fostering a Research Network of scientists that use their expertise to benefit families affected by KAND.
Patient-centered research requires a committed dialogue between the KIF1A community and scientists, to ensure research reflects the needs and priorities of the community.
With pilot funding from KIF1A.ORG in 2021, Dr. Kaur’s team has built an incredible KAND research program that continues to evolve with the KIF1A community.
They have taken patient family feedback to drive much-needed research including a speech and communication study; a lived-experience study that brought family perspectives into the scientific literature; and a review of different KIF1A mutations and KAND therapeutic approaches.
In addition to these projects, they have worked closely with KIF1A.ORG and KIF1A.AU’s Australian families to build advocacy and awareness efforts, opening doors for future opportunities.
2026 Research Update
In their most recent report, Dr. Kaur’s team sent surveys to KIF1A families involved in KIF1A advocacy. Responses highlighted how the MCRI program’s research and science communication helped families learn, educate, and advocate for their needs.
“The program did more than connect me to research. It helped shape my confidence, my career direction, and my aspirations for the future.” ~Survey Participant
These efforts are worth celebrating, but it doesn’t stop there; Dr. Kaur’s team is committed to partnering with the KIF1A community to create patient-centered and patient-driven research. Here are some of their priorities moving forward:
- seeking and responding to family and community advice
- involving contributors throughout research wherever appropriate, rather than only at
recruitment or dissemination - supporting research initiated or led by people with lived experience
- reassessing and updating project goals as our knowledge of the lived experience of
KAND expands
We are so grateful to researchers like Dr. Kaur who strive to make meaningful differences with their research, and look forward to the next 5 years of collaboration.
Some words from Dr Kaur
We warmly invite people living with KAND, families, community organisations, clinicians and researchers to help shape the next phase of this work. To express your interest, please contact Dr Simranpreet Kaur at Simran.Kaur@mcri.edu.au