First Patient Advisory Board Meeting, Milan, June 1st 2014

On June 1st, 2014 the Dutch Genetic Alliance (VSOP) hosted the first Patient Advisory Board (PAB) workshop in Milan in conjunction with the ESHG (European Society of Human Genetics) Human Genetic Conference (May 31 – June 3, 2014).

The Patient Advisory Board (PAB), one of two Advisory Boards working on the CloSed Project, aims to ensure the involvement of patients and their representatives in offering a patient’s perspective in regards to ethical, practical and communication issues involved with the project.

It is currently comprised of representatives from relevant European patient organisations, all familiar with the paediatric care in PICUs. At the moment the PAB consists of 8 people representing:

  • The UK, France, the Netherlands, Italy, Sweden;
  • Preterm or illborn children;
  • Downsyndrome (cardiac problems related);
  • Children Anaesthesia, Intensive Care and Cardiology Clinical Study Group (CSG);
  • Rare diseases;
  • Child and hospital;
  • Rare brain diseases.

This first meeting was incredibly productive as it served as an informative introduction to the CloSed Project, especially concerning the practical aspects of the informed consent procedure and information sheets.