A major goal of the neuroscience community is to develop treatments that will slow or forestall the progression of Parkinson's disease (PD). PD is one of the most common adult-onset neurodegenerative disorders, affecting approximately 1 million people in North America and is characterized clinically by resting tremor, cogwheel rigidity, bradykinesia and postural instability [Lang &Lozano, 1998]. The clinical features of PD usually emerge in mid to late adulthood with tremor and bradykinesia being the most obvious initial manifestations. Illness and disability progressively advance despite treatments that temporarily ameliorate the signs and symptoms of PD. In the later stages of the illness approximately 75 percent of patients will develop deterioration in cognitive performance [Aarsland 2003;Hely 2005] and disorders of mood and behavior in addition to the progressive impairment of motor function. Eventually PD may lead to profound functional disability in the areas of employability, ambulation and self-care. [Taken as exerpt from NET-PD protocol] Net-PD is the vehicle to answer some of these issues over time but as time progresses, so do the disease states of the 24 enrolled subjects. These subjects are in varying stages of the study from 1 year to 4 years participation. This impacts effort, in that some are in clinic every 6 month and some are in clinic on an annual basis, requiring more frequent follow-up than mandated by study protocol. Dr. Jankovic, the site PI, for the NET-PD study (NS044441), will require 3 calendar months to review the medical records of all 24 patients currently enrolled and followed in the trial and search for trends in progression of the disease by tracking UPDRS and other efficacy measures collected over the current year. He will also review the case report forms for any adverse events and correlate them with the study medications. In order to achieve this project, Christine Hunter, RN who serves as the research coordinator for the NET-PD study, will work with Dr. Jankovic to ensure timely, accurate and complete collection of data and providing educational, counseling, and other support for the subjects and their care giver. As the study participants are progressing across the disease spectrum, they are requiring more attention and time from the staff and faculty, particularly, Christine Hunter, RN coordinator, and Joseph Jankovic, MD PI, here at the Center. In addition to coordinator duties, Christine Hunter also helps us manage the disability determinations, cognitive assessments and tracking of information between institutions in several states. We have participants, from all over Texas, Arkansas, Oklahoma, Louisiana, and Mississippi. Many of our participant's do not all live locally, thus increasing the time and effort to keep track of them and keep them in the study. We spend close to 30% more effort than in the beginning of this study in the management, counseling, retention and clinical care needed as Parkinson's disease progresses. We have aging patients who are experiencing hospitalizations for unrelated illnesses in the interim between visits. This requires coordination of care across specialties as well as within Movement Disorders. As examples, we are currently working with a participant who had had 2 coronary stents placed recently, but we are also coordinating care with his Cardiologist to get a leaky valve replaced in September. To that end, coordinating the discussions among the PI and specialists, family and caregivers on how to get this done is very time sensitive and consuming. We are discussing his determination of surgical candidacy versus a less invasive approach given his health condition, progressing PD, age related changes and potential impact on study participation. Another participant has bladder cancer and we are coordinating his PD related care with his nephrologist/oncologist, another has newly diagnosed renal insufficiency and will require ongoing care. Study retention in this more than 5 years duration study is critical to the success of this endeavor. Increased efforts to maintain contact with these subject's, provide ongoing support for the subject and their family and communication between care providers is key to study retention. The additional costs for supplies covers some transportation for the participant i their caregiver is unable to drive them to the visits, parking assistance, mailing, faxing, telephone contact for follow-up over and above the required visit schedule. Meal assistance is also offered if they come from out of state, and need this type of assistance. In these times of economic hardship, our elderly with chronic disease states are at particular risk and their continued participation in this long-term study, should not be a financial burden for them.
