In the early days, many research groups relied on reaching out to hospitals to find patients. However, as awareness of ethical research practices grows, we’ve seen a rise in the development of clinical and patient registries. These registries are ethically binding and governed by strict laws to protect patient confidentiality. Participants have maximum autonomy over their information, including the ability to decide how it’s used and to withdraw from studies at any time. These measures ensure that participants’ rights and privacy are respected throughout their involvement in research.

Registries also play a key role in connecting individuals and families with clinical trials. By participating in these trials, members of our community contribute important data, including biomarker tests, imaging results, and genomic information. This information helps researchers save time and resources that can be better spent finding treatments and cures. Furthermore, registry data can lead to new research ideas and help answer questions that may not be possible to explore through traditional clinical trials. This shows just how crucial registries are in furthering our understanding of Huntington’s disease.