We have identified approximately 350 women with lymphangioleiomyomatosis (LAM) in the UK and are compiling a national database to facilitate research and help to produce management guidelines for women with this disease. We believe that progress in the understanding and management of rare diseases such as LAM can only be achieved in this way. We hope therefore to recruit as many women to the database as possible. We also hope that being on the register will be of benefit to individuals with LAM.
The aims of the register are:
- To provide data on the natural history of lymphangioleiomyomatosis.
- To facilitate clinical research – in the future we hope this will include prospective clinical trials of treatment. It may possibly be used to enable blood and perhaps tissue biopsies to be made available for cellular/genetic research.
- To raise awareness of lymphangioleiomyomatosis and in this way improve diagnosis and management of the disease.
Enrolling someone onto the register means that:
- Women would be given information about the LAM self-help group and the LAM fact sheet if they wished to have it.
- Women would be asked for basic details such as time of onset of illness, how this was made and the name of their medical practitioner. They would also be asked if they would be willing to be approached for information relevant to LAM from time to time and whether they would be willing for their data to be used for studies of LAM. Women with LAM or doctors may stipulate how much they wish to be involved and/or contacted.
- Women who have given consent may be asked for information without necessarily involving their doctors or physician. Any other approaches including any request to participate in trials of treatment in the future would involve full consultation with both women with LAM and their doctors.
Patients – to enrol yourself please contact Jill Pateman who will send you the correct forms.
- Confidentiality would be respected and data storage would comply with data protection guidelines.
- Any approach to someone with LAM for information would have been approved by an appropriate ethics committee.
To enrol someone on the register or for further information please contact Jill Pateman or Prof Simon Johnson.