Finding a treatment for LAM and gaining a better understanding of the condition are primary aims shared by women with LAM and their families and LAM researchers. There are several ways in which you can be involved in LAM research:
- Information – First, you may be interested to know what research is currently taking place and what trial results have become available. A good way to learn about this is through the annual LAM Action meeting, in which LAM research and latest findings are presented in a non-technical and accessible way, and by signing up to the LAM Action newsletter.
- UK National LAM Register & National Centre for LAM – We encourage all women in the UK with LAM to join the UK LAM Register, as this national database facilitates research into the disease. Women attending the National Centre for LAM can also get involved in research; in conjunction with the University of Nottingham, the centre facilitates research into LAM, including clinical trials of new therapies for LAM, biomarker studies and laboratory research into the disease.
- Trials & Studies – You may wish to consider enrolling in a trial for or study of women with LAM. News of trials and studies that are recruiting patients are available through the LAM organisations’ websites (some trials and studies recruit internationally). For a description of some of the work being done, please click here.
- Tissue Donation – You may wish to donate your unwanted tissue (including lymphatic fluid) to LAM research here in the UK. LAM tissue is extremely rare and a precious resource for LAM researchers trying to understand the condition. Some patients may undergo surgical procedures that result in tissue being removed (e.g. pleurectomy, fluid drainage, kidney surgery, lung transplant). In those cases, the unwanted tissue would normally be thrown away. But it can be of great use to LAM researchers. If you know you have a surgical procedure scheduled and would like to discuss the possibility of donating the excess tissue for research, please contact Havi Carel (firstname.lastname@example.org).