Brisbane Marfan Clinic
In 1992 Professor Malcolm West and Mrs Jennifer West set up the multidisciplinary Marfan Clinic at Prince Charles Hospital in Brisbane along with Professor Kim Summers, Molecular Geneticist, Dr Denis Stark, Ophthalmologist, Dr Jim McGill, Clinical Geneticist and Dr Madelyn Petersen, Genetic Counsellor to provide reliable diagnostic and management advice to people and their families with concerns about Marfan syndrome (MFS). The Clinic has been held at regular intervals since.
General practitioners usually refer people to the clinic for definitive diagnosis and advice regarding treatment. During the course of a Clinic day, people are reviewed by a Genetic Counsellor, a Cardiologist, an Ophthalmologist and a Clinical Geneticist. The referring doctor and the patient are advised in writing regarding the outcome of the assessment and a management plan is provided. Opportunities for return to a weekly smaller clinic for monitoring and specific management are also offered.
As a result of experience gained at the Clinic it has become clear that Marfan syndrome is a complex condition with many vagaries. There are a number of other conditions with similar clinical problems and management issues. There are some people who have arterial aneurysm disease from other causes and who may also need close monitoring or specific surgical treatments- these people also attend the clinic.
One role of the Clinic is to assess the family history of those who present with Marfan syndrome especially first degree relatives. This has resulted in considerable expansion of the number of known cases of those with MFS and related disorders.
Members of the Clinic are closely involved in research activities relating to aneurysm disease in MFS. As a result of publications in scientific journals and presentations the clinic has achieved a high reputation in this field both in Australia and internationally.
Members of the Clinic have a close relationship with the Queensland Marfan Association and Marfan Foundation Australia.