CHANGES TO TISSUE COLLECTION FOR LAM RESEARCH

Many UK LAM patients very kindly signed up to the international tissue collection programme run by the NDRI (National Disease Research Interchange), based in the US. Since 2007, the NDRI registered 30 patients and collected 33 samples from the UK and other countries in Europe, and these were sent to the lab in Nottingham, as well as to researchers in Finland. Having this service resulted in precious tissue being supplied to research labs working on finding a treatment for LAM and understanding the disease better.  Sadly, due to shortage of funds, the NDRI are unable to continue work on the international LAM programme. UK Lam patients who have signed their consent forms will have received a letter in the post announcing the withdrawal of the programme. The NDRI have said that unless otherwise directed, they will maintain patients’ details and consent forms, in case they are able to resume the programme in the future. Those who wish to be removed from the NDRI LAM registry should contact the NDRI’s LAM coordinator, Barney Soskin, at bsoskin@ndriresource.org or call Daniel Remer, NDRI’s rare disease programme manager, on +1-800-222-6374. The NDRI will continue collecting LAM tissue for research within the US.

What happens next?

For the time being, we will continue to collect tissue and send it to the LAM research lab in Nottingham, run by Prof Simon Johnson. We are still very keen to collect tissue/ chyle, which will be used within the UK. We are currently setting up a UK-wide system and will update you as this system develops.

In the meantime, Havi Carel will act as tissue coordinator. Havi’s telephone numbers are: 0117 9079359/ 07726 907096, and her email is havi.carel@uwe.ac.uk.

LAM tissue is a valuable and scarce resource. Many researchers wait months for LAM tissue, the lack of which is holding up research and progress in understanding the disease and working towards a treatment. Patients can help by donating LAM tissue and fluid. As a LAM patient you may know that you are going to have some kind of surgical procedure related to LAM on your lungs, kidneys or anywhere else. This is a good opportunity to help the researchers who very much need your tissue to continue their work on understanding and treating LAM. After most operations some of the tissue removed is not needed for your diagnosis or treatment. This ‘spare tissue’ can be used in LAM research and is a very scarce resource. You may also be able to donate chyle, kidney tissue or other fluid.

If you know you are going to have a procedure, such as pleuredesis, a lung transplant, draining of chyle, or any other surgical procedure, and are willing to donate tissue (this is tissue that will be removed anyway and is not needed, such as an explanted lung) please contact Havi ASAP to discuss the tissue retrieval and shipment to a research lab. It is important that we know about the procedures as far in advance as possible, as setting up the retrieval and shipment of tissue is a complex process and the tissue needs to get to the lab within 48 hours.

Thank you for your help and please don’t hesitate to contact Havi if you have any queries.