First-ever international meeting, 1-2 June, 2015
On Monday and Tuesday, 1-2 June 2015, leaders of HSP support groups from around the world met for the first time ever in Madrid, Spain to identify important issues of mutual interest to HSPers everywhere and to lay the foundation for collaboration and joint effort looking ahead.
Registry of HSPers
A central issue for everyone involved with rare diseases such as HSP is the challenge of having sufficient numbers of suitably qualified participants for clinical trials, especially for phase III.
Dr. Rebecca Schüle, a highly regarded practising HSP neurologist, researcher and co-founder of the HSP patient database in Germany, who is currently on sabbatical study at Miami University’s Miller School of Medicine conducted a half day session addressing the challenges involved for support groups and laying out a detailed proposal for overcoming them.
Group leaders now have a common understanding of what it is going to take to have sufficient numbers of qualified participants to achieve definitive results from clinical trials. President of the HSP Research Foundation, Frank McKeown, commented “There is a lot of hard work ahead, and the way forward is not that clear as yet. Integration of existing databases and registries in different parts of the world presents huge challenges both from an information technology standpoint and also from a practical perspective given the level of commitment and collaboration that will be required from key players. However, there is cause for cautious optimism as at least we are confronting the challenge head-on, not shirking it, and hopefully are far enough upstream at this point to be able to deliver adequate numbers of suitable candidates for later stage clinical trials when the time comes. This is inescapably a multinational endeavour”.
The meeting also explored a proposal to adopt a unifying symbol and logo for HSP internationally and a working group has been formed to advance that proposal.
Numerous potential projects were identified by the group and these will be reported on over time.
The meeting was held in Madrid following the annual conference of the European Organisation for Rare Diseases (Eurordis) to make it as logistically and financially feasible as possible to get HSP support group leaders from around the globe together. Support groups leaders attended the meeting from France, Denmark, the UK, Spain, Italy, the Netherlands, Switzerland, Australia and the USA.