At this time, case reports are the only form of publications for LYMF. A case report is much different than formal research that can provide a form of consensus. A case report will describe retrospectively (looking back) of usually one specific case. They can include more than one particular case - especially if a physician attempts specific treatments or pharmaceutical regimens on more than one patient with the same diagnosis.

The problem with case reports is that they only provide information that can be used in formulating formal research studies and/or clinical trials. With LYMF/Gorhams Disease - the reports provide statistical information that cannot be confirmed by any formalized information collection systems such as databases that include wider samples of patients with structured information collection. In order to provide credible statistics - a comprehensive database needs to be implemented and populated over a period of at least one year. The longer the database is in effect - the more credible and reliable the information represented is.

The LYMF Foundation is in the process of implementing a basic database that has been created for us to begin to formally collect information regarding LYMF patients. In order to insure the security of the forms - we have purchased a security certificate that will insure that the data collection section of the website is encrypted. We are in the process of evaluating all of the issues that will best protect the confidentiality and integrity of this information. We will provide an announcement when we are ready to have this important tool implemented. The information collected will protect identities - but will have the capacity to supply researchers with vital data for prospective research endeavors.

This page will provide information regarding research endeavors and related issues and challenges.