A Message from CurePSP’ s Director of Clinical Affairs
Lawrence I. Golbe, MD
Anyone embarking on the journey with PSP or a related disease as a patient, family member, or caregiver knows that finding detailed information on the disease is not easy. Few doctors know much about PSP or have time to share what they do know. Medical literature is too technical; articles provided by organizations devoted to Parkinson’ s disease are too superficial; and much of what’ s on the Internet is just plain wrong. One of the founding purposes of CurePSP in 1990 was to correct that state of affairs. This book is one big way of doing that.
Research into PSP has made important progress in the past few years. Drug companies have started clinical trials of treatments to slow the ongoing progressive course, and more are entering that arena each year using a variety of approaches to the problem. Genetic studies have revealed a few DNA variants, each with a contribution to the cause of the disease that’ s too subtle to elevate the risk to family members but important enough to point to new drug targets. New techniques have become available for rapidly testing drugs in the lab using stem cells. A new set of diagnostic criteria for PSP and for its several newly identified variants has been published and validated. The same set of criteria can identify the early, uncertain stage of PSP. Progress is being made in finding a diagnostic test of blood or spinal fluid, and a new type of PET brain scan may, in the next year or two, prove able to identify PSP before it even causes symptoms.
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CurePSP has been at the forefront. We have formed collaborations with multiple organizations large and small to bring their resources to bear on“ our” disease. We continue to provide grant money to established, top researchers and to students doing faculty-supervised summer projects on PSP. We convene an annual international scientific conference at which researchers share their findings and ideas. We have formed a network of clinical centers at medical schools with verifiable expertise in PSP, our Centers of Care initiative.
Perhaps one measure of our success has been documented in a paper that two colleagues and I published in the journal Movement Disorders Clinical Practice in early 2018. We wanted to know if people with PSP were receiving that diagnosis with less delay than was the case in past decades. Sure enough, in the patient population in New Jersey, the average delay from initial symptom to a diagnosis of PSP, or even a suspicion of it on the written record, declined from 44 months in the 1990s to 29 months in the 2010s. This dramatic improvement in the awareness of PSP by physicians may in large part be the work of CurePSP, which, since its founding 1990, has educated physicians and laypersons in recognizing early features of PSP.
Please let us know how we can continue to improve this guide in future editions. We hope it is helpful, readable, authoritative, and above all, hopeful.
Lawrence I. Golbe, MD Director of Clinical Affairs, CurePSP