Behind the scenes we have been for a whil now, and finally we can go public: we recently entered into an official partnership with the DCAA Foundation, the LUMC and researchers in Australia and America who are involved in (non-) hereditary CAA. The collaboration is called 'the consortium' and the joint goal of the parties is to accelerate and facilitate the route to a possible drug.
Two pharmaceutical companies that are interested in a possible drug have joined the consortium and are therefore making an investment. The first step of the consortium is to combine the natural history studies, which are currently being done in Leiden, Boston and Perth. This is important, because it can also be used to determine at what point in the disease process (for example, before the first bleeding) a potential medicine must be used to work optimally.
All partners in the consortium will meet (online) several times a year to evaluate the progress of the NHS studies. We are pleased with the partnership, which represents a new step forward towards a possible drug. In this context, it is our goal to always put the interests of all (potential) gene carriers first.
In the near future we will, together with the LUMC, organize a webinar about what this proces means for people dealing with HCHWA-D.