Biomarker Study

We are happy to announce that the first research ever to include LYMF patients is in progress. The study is coordinated by the Rare Lung Disease Consortium (RLDC) and Dr. Lisa Young at the University of Cincinnati.

Dr. Young is an independent researcher in relation to the LYMF Foundation. Her research has opened a door for patients with diseases that involve abnormal development of the blood vessels in their lymphatic systems to determine if there are any blood tests that can be useful in evaluating the severity of their disease. 

It is important for you to understand that your participation in this research is strictly voluntary and Dr. Young will be available to answer any questions you may have about this study. 

This is a groundbreaking step for the Lymphangiomatosis Foundation as this is the first study that has involved LYMF patients with an approved research protocol.  As this is a first, please understand its significance in that it is only a beginning, but provides us with greater opportunities than are available today for future investigations.

The study is currently configured to accept adult patients in the United States and Canada. We hope that in the future - the studies may be able to include international patients as well as children. To protect the integrity of any research, specific guidelines are set at prior to the start of any study that is performed.

Requirements for the study

The requirements are that each patient must receive and sign a form that fully describes the study. Dr. Lisa Young at the University of Cincinnati will be available to answer any questions you may have prior to signing the form.

Once, Dr. Young receives your consent - she will mail you a study kit that includes all materials and directions for you to participate in the study. The requirments are two (2) tubes of blood that can be included in any blood draw that you may already.

I (Sharon White) - have already participated in the study and also am available to answer any questions you may have from a patient's perspective. It was a very simple procedure and my lab was familiar with this type of request and already had guidelines in place to process the specimens.

I strongly encourage any adult patients with the diagnosis of LYMF to contact me for the information for you to participate. We need a minimum of 18 patients which is possible. I cannont stress strongly enough how important it is for each of you who is eligible to participate as your participation will demonstrate that there are more than just a handful of us out there to be studied and will help encourage otherwise reluctant researchers to include us in their studies.

The Future of this Study

The protocol is being evaluated to include revisions that will allow pediatric patients to participate. We are hoping that this approval will occur very soon. Please contact the LYMF Foundation if you are interested in having your child participate in this investigation at foundation@lymphangiomatosis.org and we will notify you immediately upon approval.

Any adult patient not previously contacted by the foundation via email can contact the LYMF Foundation at: foundation@lymphangiomatosis.org and we will provide you the information to contact Dr. Young so that you may be included.