Mestre (Venice), Italy, November 18th, 2012
Aniridia Europe Board of Directors and Scientific Committee met at the Veneto Eye Bank Foundation in Mestre, Venice, on November 18th, 2012.
This Scientific Committee, currently composed by five doctors representing five different European countries, has the mission of giving advice to Aniridia Europe Board, fostering research on aniridia and getting involved in the organization of European conferences on the disease.
Patients representatives conveyed their concerns and priorities regarding topics like: European Registry of Aniridia Patients, European Protocol on Aniridia and European research projects on the disease.
To reach this goals, the Scientific Committee suggested that there is a need to involve other health professionals of different specialties in the different countries and to create a network.
The Scientific Committee proposed then to work on getting a consensus for a European protocol on Aniridia. The starting point will be the translation into English of the two already existing protocols (Spanish and Italian)
On the development of a European Registry of Aniridia Patients, the Scientific Committee expressed the availability to collaborate with national and European institutions and organizations involved in registries. They proposed to create a working group composed by four SC members and one patient representative to develop all the aspects related to this issue. The suggested workflow is to start with national registries and to pool data at European level in a second step.
The next European conference on Aniridia, programmed in 2014 in Italy, was also a key topic in the agenda, as well as the possible participation of some SC members in the next Conference on Aniridia, organized by the Aniridia Foundation International AFI in the United States in 2013.