Last week I signed the papers that makes me officially part of the research into Lymphoedema at Macquarie University Hospital, Sydney, Australia. The Advanced Lymphoedema Assessment Clinic at Macquarie University has been granted approval by its ethics committee to conduct research into the causes and treatment of Lymphoedema. One of the main focuses will be to understand why some people develop Lymphoedema and others do not, also why in some cases the fluid turns to fat over time. The Chief investigator is Professor John Boyages of Macquarie University Cancer Institute.
I have been given three different “Participant Information Statements” to read, each requiring my signature to use my details and to gather information for this research. The first is to use information already gathered pre surgery. This includes pre surgery measurements, L-Dex reading, range of motion, photos of limb, MRI and Lymphoscintigram. These tests will then be repeated after surgery at 6, 12, 18 and 24 months. Blood will also be taken every 6 months to test for “markers” such as Protein in the blood to see if there are changes as treatment progresses. All this creates a record of results after surgery. My second signature was required to take part in these ongoing tests, follow-up and for results to be used for “Lymphoedema Medical Research”. The purpose of the study is to better understand the underlying biological causes of Lymphoedema, to improve and better understand of ways to treat Lymphoedema.
My third signature was required for the last part which is Genetic Testing. I was not sure about this, as I did not want to know the results, but I was able to request that I not be given these, but they can use them for their studies. To be part of this study blood will be taken and tested for its DNA structure. The genetic testing will be used to see if there is a genetic profile which makes one predisposed to Lymphoedema. They will compare various people, those with Primary Lymphoedema, Secondary and those with no Lymphoedema. In this way they hope to be able to assess people’s risk factors, if there proves to be a pattern in the Genetic tests. That way when nodes are removed someone who is at risk could be more aware and protect their limb before Lymphoedema starts.
The research will include those having Liposuction (the liposuction is not the same as that used for slimming as the lymphatics are avoided and thinner canulars used, it is a specialist treatment) and Lymph Node Transfers of both legs and arms. For the genetic testing people without Lymphoedema will also be used for comparison.
This is invaluable research which has been missing, even though these procedures have been done for some time overseas, there has not been good follow-up of results or research. The genetic testing will hopefully tell us who is at risk of Lymphoedema and therefore lead to a minimising of vulnerability. All research is welcome as it shines a light on the difficulties of living with Lymphoedma…. I will keep you posted on progress as my 6 month tests will be in September. I hope that at the end of the study there will be some interesting and constructive conclusions but this will be in a few years time, to allow follow-up over a two-year period.