News nr. 29 | September/October 2012
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Cystic Fibrosis - Specialist Centre for the Treatment of Cystic Fibrosis

Cystic Fibrosis 
Dra. Pilar Cardim

Santa Maria Hospital has the largest specialist centre in the country for the treatment of cystic fibrosis.  

The centre meets the requirements established by the European Cystic Fibrosis Society to be considered a reference hub for the treatment of this disease: 

- Over 50 patients being followed-up on a permanent basis.
- Multidisciplinary team comprising paediatricians, pulmonologists, specialist nurses, kinesiotherapists, dieticians, psychologists, and social workers.
- Infrastructures complying with infection control policies.
- Programmes for the transition of the Paediatrics Unit to the Adult Centre.
- Educational programmes for patients and their families.
- Integration in a University Hospital conducting research projects. 


The Cystic Fibrosis Specialist Centre of Santa Maria Hospital has two units: the Paediatric Centre in the Paediatrics Department, which became autonomous in 1989, and the Adults’ Centre in the Pulmonology Department, which became autonomous in 2003 following a transition programme initiated in 2000. 

The Adults’ Cystic Fibrosis Specialist Centre has two pulmonology doctors, nurses specialized in respiratory kinesiotherapy, a dietician, and a social worker. 

In terms of infrastructure, it has an area for individual consultations in accordance with the requirements of the European Cystic Fibrosis Society, following a policy of separating patients according to colonizing microorganisms, and two isolated single rooms for hospitalised patients, also in accordance with international requirements. 

Of a total of over one hundred patients who are being treated at the Specialist Centre of Santa Maria Hospital, 44 are being followed-up at the Adults’ Centre, whereas other patients are still in the transition programme, for which reason they are treated both by the Paediatric and the Pulmonology teams. A few of the patients treated at the Adults’ Centre since 2003 have died, while seven underwent bipulmonary transplantation successfully. Patients treated at the Adults’ Centre were all followed-up at the Paediatrics Department of Santa Maria Hospital until they reached 18 years of age, so that they can continue to be treated at the same Centre. Adult patients referred by several health units in the middle and south of the country are also treated at the Centre. 

This centre is also part of the European Cystic Fibrosis Society, and referenced as the Portuguese centre where foreigners living or on holiday in Portugal should go to if necessary. 

In addition to the provision of care, the Centre conducts clinical research and presents papers at national and international scientific meetings. It collaborates on a research project conducted by the Proteomics Department of Instituto Ricardo Jorge that aims to identify and characterise proteins that may contribute for the development and progression of lung disease. This project has resulted in a few publications in international journals and acted as a basis for two doctoral theses in the field of molecular biology. The Centre is also part of the European Cystic Fibrosis Society Clinical Trial Network and is involved in two international clinical trials conducted at several centres on the treatment of this disease. 

The work carried at the centre has encouraged six medical students to write their integrated master theses in this area. 

With regard to undergraduate and postgraduate education, year 4 medical students become acquainted with this pathology in adult patients. This topic is also regularly talked about at scientific meetings and master degree courses. 

The two doctors in Pulmonology Unit I who belong to the Cystic Fibrosis Adults Centre of HSM are also part of the Organizing Committee of the European Congress on Cystic Fibrosis, which will be held in Portugal for the first time in 2013.

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Coordination:
Prof. Doutor J. Fernandes e Fernandes
Editorial Commitee: Prof. Doutor J. Fernandes e Fernandes, Prof. Doutor Alexandre Ribeiro, Prof. Doutor António Vaz Carneiro, Prof. Doutor João Ferreira, Dr. Luis Pereira
Information Officer: Ana Raquel Moreira
Editorial Team: Ana Maria Silva, Ana Raquel Moreira, André Silva, Lara Ponte, Miguel Andrade, Rui Gomes, Sónia Barroso, Susana Henriques, Tânia Simões
Collaboration: Communication and Image Office - Ana Isabel Gonçalves da Silva, Bruno Moura
Design and Technical Support: UTI 
Design and development: Spirituc
e-mail: news@fm.ul.pt