NEWSLETTERS
INTERNATIONAL IgA NEPHROPATHY NETWORK
Newsletter – July 2007
Registered UK Charity
The International IgA Nephropathy Network is now registered as a charity in the UK. We have registered the following objectives for the charity:
To promote medical research into the causes of the kidney disease known as IgA nephropathy and to disseminate any useful results of any such research
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The relief of sickness of people with IgA nephropathy and their parents and carers
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To advance the education of the public in IgA nephropathy
10th International Symposium on IgA nephropathy - Tokyo, October 2006
We had a very successful 10th International Symposium on IgA nephropathy in Tokyo in October last year. We are very grateful indeed to Yasuhiko Tomino and all his local organising committee for putting on such an excellent scientific programme as well as giving us very warm hospitality. The proceedings of the meeting will be published soon by Karger and we look forward to them being available. It was particularly good to have a programme in which leaders in the field presenting their state of the art experience rubbed shoulders with young investigators with exciting new data, who are the future of our work.
11th International Symposium on IgA nephropathy - Italy, May 2009
Our next International Symposium on IgA nephropathy will be held in May 2009 in the beautiful Italian Lakes region in northern Italy. It will be a satellite symposium of the World Congress of Nephrology which is being held that month in Milano, Italy. Rosanna Coppo will be the local organiser, and you will hear more about the plans in due course.
Consensus Classification for IgA Nephropathy
Many of you are involved in this work which is progressing steadily. Things have not gone quite as quickly as we had hoped, but developing consensus work involving nephrologists and pathologists from every continent on the globe inevitably takes a bit of doing!
The present situation is that we have now completed the assembly of an impressive database of clinical information on over 320 adult and paediatric patients with IgA nephropathy from four continents. This includes patients from Canada, Chile, China, Hong Kong, France, Italy, Japan, Poland, UK, USA. These patients have a range of clinical outcomes and there are sequential clinical data on them all. Biopsies are available on all these patients and the biopsies are currently being scored by pathologists all over the world. There is a highly efficient system for circulating the biopsies which has been masterminded by Ian Roberts (Oxford, UK). Once the biopsies are scored an analysis will link the histological findings with clinical outcomes; this analysis of the data is being undertaken by Stefan Troyanov (Montreal, Canada). We intend that this work will lead to a proposal for a new classification for IgA nephropathy, and we will then need to test that classification again in a further large group of patients, before we publish our proposal.
Once again our thanks to all the nephrologists and pathologists who have made an enormous effort to identify appropriate cases from their own databases and to provide us with all the necessary data.
If you have not been involved so far in providing cases, we still warmly welcome your involvement; we will need to identify additional large numbers of cases to see this through to completion.
If you have a database with significant numbers of patients with IgA nephropathy we would be delighted to hear from you. Please contact John Feehally or Rosanna Coppo
‘Free of Charge’ Membership
We are hoping to make a big increase in membership of the Network in 2007. We have decided there will no longer be a membership fee. We appreciate that the some of you decided against joining the Network because of the complication of paying the fee over the Internet. We also realise it is important to strengthen the activities and achievements of the Network before we again ask for a membership fee.
We hope that this ‘free of charge’ membership will encourage you to join the Network. All we will ask is for you to provide us with your contact details and we will then check with you once a year to keep our records up to date.
We hope that this change will mean that many people in all parts of the world who are interested in IgA nephropathy will now join the Network. This will enable us to communicate effectively with the whole ‘IgAN community’, ensuring you are up to date with the Network’s initiatives, and making it easier for you to be involved..
We also hope that a Network with large worldwide membership will be able to increase its profile and attract more funding from outside sources to support the work, and fund new initiatives.
Rosanna Coppo
John Feehally
July 2007
