Phakomatosis experts get together at the IGTP
The professionals that make up the Reference Centre (CSUR) on Neurocutaneous Syndromes- Phakomatoses, have met up together at the IGTP. The aim of these regular meetings and mini-symposiums is to revise the work done in healthcare and research, including innovations, new approaches and the lines of research underway. The prescence of different professionals in the meeting provides a more global view of the work carried out by the whole group and a better reciprocal understanding of the healthcare and research aspects.
The healthcare branch, coordinated by Dr Ignacio Blanco, is specialized in the management of phakomatosis patients at the Germans Trias University Hospital (HUGTiP) and the Catalan Institute of Oncology (ICO) and is made up of specialists from different departments (clinical genetics, otorhinolaryngology, dermatology, neurology, neurosurgery, pathological anatomy, oncology, imaging etc.). It works closely with the Hereditary Cancer Diagnostics Unit at the IGTP, coordinated by Dr Elisabeth Castellanos. The multidisciplinary aspect of the CSUR means it can offer a much wider and better service to patients who suffer from these genetic diseases. The CSUR-Phakomatosis both complements and benefits from the research work carried out by the Hereditary Cancer Research Group of the IGTP, led by Dr Eduard Serra; the Hereditary Cancer Group at the ICO led by Dr Conxi Lázaro and the Clinical Genetics Programme and Genetic Counselling Service, both led by Dr Ignacio Blanco.
In this last session for 2018, apart from matters of internal organisation the group examined several cases from the clinical side and advances in diagnostics research. "These meetings are essential, we need this space to share the information which allows us to interact and detect how we can continue to improve patient management and also how to keep advancing in research," considers Dr Serra.
The meeting was also attended by professionals from Can Ruti and the Sant Joan de Déu Hospital, Barcelona, recognized as a CSUR Centre in management of the same diseases in paediatric patients. The two centres work closely together to improve healthcare and research, but above all, to facilitate the transition of patients whose follow-up moves from one centre to the other. It is of note that both centres receive phakomatosis patients from all over Spain.