One of the most exciting things to come out of the 1st International PLS Symposium was the idea of a worldwide PLS registry.  Since PLS is so rare, there is a real need to identify patients and make their information, medical history, disease progression, etc. available to researchers around the world.  Some new technologies are showing promise in earlier diagnosis and even treatment of symptoms.  Researchers need to know of patients that are willing to participate in studies, but unfortunately, they can't contact patients on their own.  A patient must volunteer first.  When your information is submitted, it goes directly to Nailah Siddique at Northwestern University.  She will then contact you and send you more information on the studies you have shown an interest in.  Please be patient, as it may take a while for her to contact you, but I promise, she will get to you!

Thank you so much!  Your participation is so valuable to our future research, and hopefully one day a cure!

This registry has been developed and is being managed by Dr. Teepu Siddique, Professor,  Nailah Siddique, RN, MSN and Lisa Dellefave, MS, CGC, Davee Department of Neurology and Clinical Neurosciences and Department of the Neuromuscular Disorders Program at Northwestern University.