Joint
initiative
This website is an initiative of the Dutch CAA Foundation, the HCHWA-D Association and Leiden University Medical Center (LUMC).
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participate in TRACK DCAA
TRACK DCAA is a "natural history study" - a study to research disease progression in Dutchtype CAA. The study is a result of a partnership between researchers in Perth, Leiden and Boston, and is funded by the pharmaceutical company Alnylam.
DCAA family members in both the Netherlands and Australia were invited to participate in TRACK, aiming for a 100 participants in both sites. Through MRI, lumbar punctures, a PET scan and neurocognitive testing, the progress of DCAA in mutationcarriers is studied.
From 2021 forward, 50 Dutch DCAA family members and 25 Australian DCAA family members enrolled in the study. They participate once a year over a period of 3 years. Most have had their final research day or are close to it.
We have learned a lot from TRACK DCAA about how to measure disease progress and how to apply these methods in a drug trial. These learnings have been used to design cAPPricorn-1, the phase 2 drug trial with Mivelsiran.
Because not everyone who participated in TRACK DCAA is eligible for cAPPricorn (because of a difference in inclusion criteria) and the need to continue the better understanding of DCAA, talks with Alnylam about continuation of TRACK or ongoing.
Requirements for participation
You are eligible to participate in TRACK DCAA if:
We make sure that you will never find out your genetic status if you do not want to know! The research team will test your blood for the gene, but these results are blinded, so the research team does not know the genetic status of individuals. We want to be a 100% sure there is no way for you to find out by accident.
If need more information or have questions you want to talk through, our confidant Sanne van Rijn can speak to you first. She will take the time to answer your questions and talk you through what participation entails.
This website is an initiative of the Dutch CAA Foundation, the HCHWA-D Association and Leiden University Medical Center (LUMC).
participate in TRACK DCAA