HD-COPE: Meeting with European patient representatives

Thursday afternoon, October 3, the European HD-COPE members and the European Huntington Association board met in Bucharest, Romania. They talked about patient advocacy and latest Huntington news. 

The main objective of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) is to shape research by being the voice of Huntington’s disease family members. Their aim is to further improve drug trials by making pharma companies incorporate the opinions of participants into the trial itself.

Sixteen people from 12 different European countries took part at the meeting. The meeting started with a presentation by Dina De Sousa (Scotland). 

Dina is both a HD-COPE member as well as a board member of the European Huntington Association (EHA). She gave a brief introduction about her attendance at the Novartis Advisory Board in September.

Novartis is one of the largest pharmaceutical companies in the world. On Sunday October 6, the company announced to the attendees at the EHA conference that they are currently in the process of developing a clinical trial to study a huntingtin lowering drug. 

Critical Path Institute

Further, Astri Arnesen (EHA President, Norway) presented the work of Critical Path Institute. Critical Path Institute – or simply C-Path – is a not-for-profit organization which brings together pharma companies, universities, patient groups, and regulatory agencies from around the world to improve public health. 

One important aspect of bringing pharma companies and regulatory agencies (such as the U.S. Food and Drug Administration and the European Medicines Agency) together is to speed-up the development of drugs. 

By talking together, pharma companies can better understand the criteria that need to be met to get a drug approved and available to people. 

The Huntington consortium

In addition, C-Path has been essential in establishing a Huntington consortium. At the moment, 17 (!) pharmaceutical companies are taking part in the consortium. All of the companies are working on Huntington’s disease. The consortium shares so-called “precompetitive information” to enhance research and drug development. 

One important function of collaborating is for instance to establish normative measurements – such as how to measure symptoms of Huntington’s disease in trials. 

Patient advocates

At the end of the meeting the HD-COPE members talked about their work since their last meeting in February. 

All of the members had been working hard to advocate for Huntington’s disease. Some had been in meetings with pharmaceutical companies, others with regulators. Two of the members had written articles about the disease – one which is about to be published in a national newspaper in Ireland this week.