National Parkinson Foundation Announces Three Novel Parkinson’s Research Projects
Release date: 9/16/2011
— Studies Funded at NPF Centers of Excellence in Chicago, Israel and the Netherlands —
MIAMI—September 16, 2011—The National Parkinson Foundation (NPF) is proud to announce support for three new research projects which fulfill NPF’s mission of improving the quality of care in Parkinson’s disease (PD).
“These three research projects will focus on key areas in the Parkinson’s field: advancing the concept of preventing Parkinson’s, using technology to better measure (and hence treat) symptoms, and ensuring that patients receive care that addresses their interests,” said Joyce Oberdorf, NPF’s President and CEO.
"Researchers from NPF Centers of Excellence have constructed several exciting projects to address critical needs in Parkinson’s. The first study targets unaffected family members who may carry the most common gene defect known to cause PD (LRRK2) to begin the construction of a paradigm for early intervention in those at risk for developing PD,” said Michael S. Okun, MD, NPF’s National Medical Director. “Another important study reminds us that we can take advantage of our smartphones to record and transmit valuable ‘real life’ behavioral information that may offer clues in tracking the progression of PD. Finally, one of the most pressing needs has been to correct the absence of a validated questionnaire that directly addresses tailoring care to individual PD patient goals.”
NPF funded the following three studies at Centers of Excellence in Israel, the Netherlands and in the United States:
Can Parkinson’s be Prevented? A Study of Healthy First-Degree Relatives of non-Ashkenazi LRRK2 Carriers with Parkinson’s Disease: Anat Mirelman, PhD, and Nir Giladi, MD, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.
The greatest challenge for many people with familial PD is the worry that they might have passed on the disease to their children. Drs. Mirelman and Giladi are addressing this issue by identifying patients with genetic PD and then working to prevent the development of PD in their relatives. North Africans have the highest penetrance anywhere of genetically-associated Parkinson’s and this study will focus on those patients. This exciting study hopes to delay or even prevent PD by applying today’s best science to people we fear may be tomorrow’s patients. Over the next several years, we hope that a set of simple interventions will prevent the development of PD versus expectations for people with similar risk factors. Once we know the risk, we hope to be able to slow or even stop the mechanisms that cause PD.
Smartphones for Ambulatory Monitoring of Gait Disturbance in Parkinson’s Disease: Mark Shapiro, PhD, Northwestern University, Chicago, Illinois.
Many of us carry a sensitive instrument for measuring motion with us every day: our smartphone. Dr. Shapiro is taking advantage of this by writing a smartphone “app” that will measure gait disturbance in people with Parkinson’s. As many people with PD know, the only sure cure of freezing is the watchful eye of the neurologist. With a smartphone, however, patients could record episodes of freezing as they go through their lives. The hope is that this will help understand patterns of freezing and also could serve as a measure for clinical trials of therapies—not just drugs but physical and occupational therapy—to reduce freezing. Dr. Shapiro has a working system that he will test in the clinic to monitor gait in PD, and, once tested, will send home with people to track episodes of freezing. This simple device could become an important biomarker for measuring PD progression.
Patient-Centeredness Questionnaire for Parkinson’s Disease: Bastiaan Bloem, MD, PhD, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands.
Today, doctors now focus on patient goals when delivering care. Nowhere is this more important than in PD: to best balance education, therapy, medication, and surgery people with PD and their doctors need to carefully consider the implications of any choice, and so patient centeredness is an important part of quality care. Until now, hospitals consulted patient centeredness using a form filled out by hospital staff alone, without patient input. Professor Bloem has developed a patient centeredness scale that is filled out by patients. With the support of NPF, Bloem will evaluate twenty NPF Centers of Excellence and understand how much and in what ways the centers succeed in focusing on the goals of the people they serve.
About Parkinson’s disease (PD)
PD is the second most common neurodegenerative disease after Alzheimer’s with an estimated one million people with the disease in the United States and four to six million worldwide. There is no cure for Parkinson’s disease and 50-60,000 new cases are diagnosed each year in the United States alone.
About the National Parkinson Foundation (NPF)
NPF supports a strong network of 43 Centers of Excellence dedicated to excellence in research and providing comprehensive, interdisciplinary care to more than 50,000 Parkinson’s patients and their families worldwide. Founded in 1957, the NPF’s mission is to improve the quality of care for people with PD through research, education, and outreach. Since 1982, NPF has funded more than $155 million in care, research and support services.
For more information about Parkinson’s disease or the National Parkinson Foundation, please visit www.parkinson.org or call 1-800-4PD-INFO (473-4636).