A way to contribute is to get involved in research. What kind of research? Enroll-HD is a project which seeks to collect health information from people affected by HD – anonymously. Its mission is to understand the progress of HD: How does the disease evolve? What symptoms do we see in HD patients? And how soon can we detect them?
Enroll looks to observe changes in people – changes that will inform us about the progression of HD and what kind of factors that influences it. Anybody who carries the gene, potentially does or is a spouse/partner (not blood related) of a person with a family history of HD can participate in the study.
All of the changes that Enroll-HD observes in the thousands of people who have already enrolled are important news because they are happening in real time. It is one thing to test a dissected idea in a lab; it is another to watch the whole disease in action over a lifetime. None of the treatments that make their way out of the lab will mean anything unless we can integrate them into our understanding of the real thing. It is Enroll-HD which is helping us do that.
Firstly, we need to be able to know if the treatments we deliver are effective. We won’t know this unless we know what disease progress looks like without treatment.
Secondly, we need to be able to figure out when to deliver treatments: do they work most effectively before a patient manifests; will they work after a certain point; are different treatments effective at different stages? We can’t start answering these questions until we can define, in fine detail, how the disease evolves.
Thirdly, Enroll-HD collects people under one roof: people that might be interested in testing new treatments – saving researchers a lot of valuable time searching for us.
Enroll is a big solution, to a big problem
There is a lot we need to know about the progress of HD before we can understand how to effectively treat it; things that we can’t dissect in a lab, that need to be observed as they happen in our bodies over our lifetimes.
Unfortunately, our lives are long and complex and the answers to these questions are complicated. To have the best chance of figuring them out we need to observe a lot of people and have the patience to do it consistently over a long time.
This requires coordination; something that could never be achieved if awareness were never raised. Enroll is a unique and important project because it mobilizes a community of people that are aware and pushes them to become part of a collaborative solution.
Enroll relies on our HD community – it only has power in large numbers. By enrolling, you support the community that makes our disease a little less rare. Enroll for the future of HD.
Read the whole article about Enroll-HD here.
One way of getting involved is to do it on a regional and local level. You can do this by getting in touch with your local association. Many of the local associations organize for people to meet and talk about Huntington’s Disease. They also often host seminars and conferences. This can be a good way to learn more about HD and get to know other people with the disease.