Patient Registry

Another important step towards more research is creating as big a registry as possible of patients with these diseases.  An accurate and properly-structured patient registry is would allow correlative studies into patient outcomes, and studies on the stratification of the patients as well as other types of cohort analysis. A registry would also be useful when recruiting patients for clinical trials and can be used by clinicians when considering the treatment options for their patients affected with lymphangiomatosis or Gorham’s disease. To make research as effective as possible, we would like to see the patient registry combined with tissue and late on with genetic data.  And in order to be successful, the Registry must be approved and accepted by both the medical and patient community, easy to use, and take proper account of the challenges of privacy in cases of rare diseases.

For rare diseases like lymphangiomatosis and Gorham’s disease, making the patient registry international is essential in order to attain enough patients to support research. We support the LGD Alliance in their efforts to form an international patient registry. We will keep you informed of progress.