We have identified over 150 women with lymphangioleiomyomatosis (LAM) in the UK and are compiling a national database to facilitate research and help to produce management guidelines for patients 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 patients as possible. We also hope that being on the register will be of benefit to patients.
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 a patient onto the register means that:
- Patients would be given information about the LAM self-help group and the LAM fact sheet if they wished to have it.
- Patients 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. Patients or doctors may stipulate how much they wish to be involved and/or contacted.
- Patients 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 patients and their doctors.
Patients – to enrol yourself please contact Jan Johnson who will send you the correct forms.
- Patients’ confidentiality would be respected and data storage would comply with data protection guidelines.
- Any approach to a patient for information would have been approved by an appropriate ethics committee.
To enroll a patient on the register or for further information please contact Jan Johnson or Prof Simon Johnson.