Stronger Together was launched this autumn by the European Huntington Association (EHA). The project aims to get the Huntington’s disease (HD) community involved in research. To reach this aim Stronger Together wants to establish a safe network of HD affected families and researchers. The network will further function as a platform where information and experiences can be shared – to improve existing care of patients and support HD research.

These days a lot of research is being conducted on HD. This research consists of two parts that complement each other. The first part is to map out the plain characteristics of HD: How does the disease evolve? What symptoms do we see in HD patients? How soon can we detect them?

Enroll-HD have been going on for four years with 11 324 people participating as of September 1. 2016.

Enroll-HD have been going on for four years with 11 324 people participating as of September 1. 2016.

A worldwide study observing exactly these questions is Enroll-HD. The study is longitudinal, that is: it observes changes by repeatedly taking measurements over long periods of time. It looks to observe HD changes in people – changes that will inform us about the progression of HD and what factors influence it.

Enroll-HD has been going on for four years with 11 324 people participating as of September 1. 2016. It is a study with an infinite end date, so it is still possible to sign up as a participant. Anybody who carries the gene, potentially does, or are a spouse/partner (not blood relations) of a person with a family history of HD can participate in the study.

As stated, the aim of Enroll-HD is to map-out how HD progresses over time and what factors influence it. It has however another important function: create a register of people willing to participate in clinical trials.

Clinical trials is the second part of HD research. While monitoring the progression of the disease is important, the ideal would be to have no disease to study at all. The important role of clinical trials are therefore to: 1) slow down the progression of the disease. This is being accomplished by studying the effect of possible medications in HD patients. 2) to ultimately prevent the onset of the disease.

So how is Stronger Together going to reach its aim? The key term is network and it’s going to consist of huntingtonians.

Many researchers are therefore working in this very moment to find a treatment for HD. But these two goals cannot be achieved without clinical trials and clinical trials need participants.

Based on the two parts of HD research, it is important that the HD community gets involved. By participating in studies and assist with crucial information, we can all learn more about the disease.

This is what Stronger Together aims to do. The project wants to speed up the recruitment to Enroll-HD and clinical trials – and further reduce the drop-out of participants. This way, research might find a treatment for HD faster. So how is Stronger Together going to reach its aim? The key term is network and it’s going to consist of huntingtonians. “Huntingtonians” was first used by Emilie Hermant and it describes all people affected by HD – either personally or professionally.

The project aims to establish trust and openness between participants and researchers. This way all huntingtonians can learn from each other. Researchers can learn how HD influences families on a personal and medical level. HD affected can further gain essential knowledge about the disease; for example how the disease works biologically and what kind of possible treatments that are being studied.

We are after all stronger together.

 

If you are new to HD and the most promising possible treatments, you can read more on HDBuzz.net.