The first weekend in February was historical: it was the first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE). They learned about research and met one of the largest pharmaceutical companies in the world.

Watch a video from the London meeting below!

Around thirty people had gathered at the Holiday Inn Hotel in London. They were old, young, men and women, they came from twelve different countries – and they all had two things in common: Huntington’s disease and HD-COPE.

The group seemed excited and eager to get started.

– I’ve taken the word hope and changed it into expect. If you say I expect a cure, I expect a treatment, it involves a commitment and energy which kinds of drives it. So I don’t say hope, I say I expect a cure, Jeanette Garcia told the crowd.

The Huntington’s Disease Coalition for Patient Engagement

After one year of planning, HD-COPE was launched in September 2017. The coalition aims to be the voice of families in research and trials with humans. They want to speak the patients’ needs and be a link between the pharma companies, researchers and the families.

The HD-COPE team consists of twenty people. These include ten European, four Canadian and six American members. They come from Huntington’s disease families: as caregivers, at-risk, gene positive or negative.

In addition to the HD-COPE team, the founders of the coalition were present in London: the European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC). The leaders of these three associations make up the HD-COPE Advisory Board.

The Advisory Board is responsible for organizing meetings with the HD-COPE team, pharma companies, regulators and researchers.

Shape research

HD-COPE wants to: 1) Improve the quality in all aspects of trials with humans; 2) Speed up the research process and 3) Make sure research is ‘for families’ and not ‘about patients’.

The overarching objectives in London was therefore to give the team members knowledge about ongoing trials, the trial process and how their input can improve the quality of these trials.

They were encouraged to ask questions, listen, challenge and to shape research.

Huntington research

Sarah Tabrizi

Prof. Sarah Tabrizi received the 2017 International Leslie Gehry Brenner prize for Innovation in Science. Photo: UCL

Right now, there is a lot going on in Huntington research. To learn about the specific trials and how they are conducted, HD-COPE visited University College London (UCL).

At UCL they met Prof. Sarah Tabrizi, the director of the UCL Huntington’s Disease Centre. Tabrizi have conducted and led many trials in Huntington research. Her latest Huntingtin lowering trial showed groundbreaking results in December.

In addition, they met Dr. Ed Wild and his team. Wild is a Principal Investigator at UCL Huntington’s Disease Centre and cofounded HDBuzz in 2010.

– Research differs from a doctor’s appointment

Back at the Holiday Inn, the team members also met Bernhard Landwehrmeyer, researcher and one of the founders of the European Huntington’s Disease Network (EHDN).

– It is important to remember that research is something different than a normal doctor’s appointment, he reminded the crowd.

The trial protocol

During the meetings, the HD-COPE team was able to ask questions. The team members were especially interested in the trial protocol.

The protocol is a step-by-step guide on how the trial will be conducted. For instance: How will the drug be administered? How many visits does the trial require a month? Are they going to be in the weekdays or weekends and so on…

These are important aspects – especially for those participating in a trial.

The future

At the last day in London, HD-COPE met Roche Pharmaceuticals. Roche is currently planning to test the specific effects of Huntingtin lowering in a large number of participants. To make the upcoming trial successful, Roche wanted input from the HD-COPE team.

The two parties talked about how Roche best can design their trial after the wishes and needs of the Huntington families and prevent participants from dropping out.

Thomas Wiese works at Roche Pharmaceuticals and highly appreciated HD-COPE’s perspectives: – Only within the two, three hours that we had so far we got so many tangible and really concrete advises. We really couldn’t have asked for more.

Read more: Latest update from Roche

Written by Maiken Arnesen