The project has enabled the European Huntington community to be better connected and have a common focus on the main objectives. All 7 EHA board members have been actively involved in the project as well as a group of volunteers from our member associations.
Stronger Together has focused on informing the Huntington community about the importance of all steps in clinical research to develop treatment for the disease. We have also done a lot to underline the importance of contributions from the community to take part yourself or support the ones that take an active role.
One important communication channel has been speaking at meetings arranged by the associations, visiting HD clinics and care homes and co-arrange meetings/HD weeks etc.
The establishment of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) has been an important part of the capacity building. The European HD-COPE team members are all active in their respective countries. They write articles and talk in meetings to inform about the ongoing research and tell about the importance of input from the community. It is also very valuable to the European community to have a strong collaboration with the US, Canada and the other partners in HD- COPE.
1. Increase speed in recruitment to Enroll-HD & Clinical Trials.
2. Improve retention in Enroll-HD & Clinical Trials
3. Increase patient advocacy engagement in the planning process of clinical trials
4. Increase patient advocacy engagement in regulatory approval processes both in EU and national bodies
Enroll-HD is a worldwide observational study for Huntington’s disease families. It monitors how the disease appears and changes over time in different people. It is in other words a prospective observational study, meaning it tracks people over time. Rather than asking people to recall how their symptoms have changed, Enroll-HD studies the symptoms – and how they have changed – at different points in time.
Enroll-HD also make up an important platform for other studies, whereas researchers can use the same study sites that Enroll-HD uses, and they can analyze the data collected by Enroll-HD.
In short, clinical trials is another term for “studies with human beings”. Huntington research often follows four steps: 1) Discovery, 2) Pre-clinical Phase, 3) Clinical Trials and 4) Approval.
The first step is the discovery phase. In Huntington’s Disease a huge landmark was the discovery of the gene in 1993. The second step is the pre-clinical phase. In this phase different treatments and drugs gets tested in animals. This testing is done to measure safety. How does for instance the body reacts when researchers try to “switch off” the Huntington gene?
If the treatment is safe, the next step is to measure safety and efficacy in humans. This third step is known as clinical trials. The fourth step is approval. This is when the drug gets approved and available to people.