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Funding from The Parkinson Alliance helped to finance the following Parkinson's research. Grantees were selected by scientific review committees of participating organizations. Updates will be posted, when available.
Project Title: Cedars-Sinai Comprehensive Interdisciplinary Rehabilitation Treatment Program for Parkinson’s Disease
Investigators/Organizers: Jeffrey Wertheimer, Ph.D. and Stephanie Lewis, SLP
Rationale: Parkinson’s disease (PD) is a complex, debilitating medical condition that is comprised of a several motor and non-motor symptoms. There is extensive research regarding pharmacotherapy and neurologic surgery for PD, and research demonstrating the benefit of individual rehabilitation treatment approaches for specific symptoms of PD, such as physical therapy for disturbances in gait and balance, speech therapy for voice disturbance, and cognitive rehabilitation for executive dysfunction. There are limited comprehensive outpatient interdisciplinary rehabilitation treatment programs, however, that collaboratively address the array of symptoms associated with PD. Furthermore, there is an absence of evidenced-based outpatient interdisciplinary rehabilitation intervention for individuals with PD and their care providers that address both the complex motor and non-motor symptoms related to PD and the distress such an illness can have on the individual with PD and his/her care provider.
1. To provide a comprehensive and structured rehabilitative program for patients with PD and their care providers through a variety of therapy techniques, education and support.
2. Establish empirically-based practice for a comprehensive treatment program.
Methods/Design: The CIRT Program is designed for individuals with PD and their care providers. The program is designed to have 8 participants (4 individuals with PD and their respective care providers/significant others). The program is an 8-week program that meets 2 times per week, 3 hours per day. Week 1 and week 8 are designed for the initial evaluation and post-treatment evaluation, respectively, resulting in 6 weeks of formal intervention. There will be a one-month follow-up session after the completion of the program. There will be a wait-list control group. In other words, there will be a separate group of 8 participants (4 individuals with PD and 4 care providers) who will undergo evaluations at the same time periods as the group receiving treatment. This second group, however, will not receive their treatment until after the first group has completed their one-month follow-up. The rehabilitation team members include a Physical Therapist, Occupational Therapist, Speech Therapist, Neuropsychologist, and Social Worker. A Movement Disorder Specialist is also integral to the rehabilitation team, particularly as it relates to appropriate referrals and discharge planning.
Relevance to Treatment of Parkinson’s Disease: The CIRT Program was established to advance evidence-based treatment for individuals with PD with the goal to improve functionality and psychological well-being, and to assist care providers/significant others with coping with the physical, psychological, and psychosocial issues ensuing from PD.
Expected Outcome: The components of the group were conceptually derived and developed in response to the medical necessity to address the many facets of difficulties that individuals with PD and their care providers experience. Expected outcomes include functional improvement for the individual with PD and increased emotional well-being and adjustment for the person with Parkinson’s and the care provider. This program is also designed to serve as a preventive approach to the development of psychological distress (or worsening of) over time.
Project Title: Speech and Deep Brain Stimulation: Treatment Options
Investigators/Authors: Elina Tripoliti, PhD; Lorraine Ramig, PhD, CCC-SLP; Cynthia Fox, PhD, CCC-SLP
Objective/Rationale: Speech can be adversely affected by bilateral subthalamic nucleus deep brain stimulation (STN-DBS) with significant impact on patients’ Quality of Life. The information available to speech clinicians who assess and treat the speech disorders related to STN-DBS is not well-consolidated or presented for the practicing clinician. Further, information regarding the array of treatment options for speech disorders following STN-DBS are not well categorized. This online course will serve to educate speech clinicians, physicians, researchers and patients on key variables related to speech and DBS.
Project Description/Methods/Design: This course will discuss three areas of the speech-DBS literature including: 1) A brief overview of basal ganglia anatomy and physiology and description of deep brain stimulation as a treatment for PD; 2) The various clinical and surgical factors that can affect speech as well as predictive factors on speech response; and 3) Treatment options, classified in two broad categories: behavioral theories (such as the Lee Silverman Voice Treatment) and biofeedback, and multidisciplinary team work coordinating adjustment of electrical parameters (frequency or amplitude of stimulation) and /or repositioning of the electrodes. The paramount importance of team work when working with patients post STN-DBS will be emphasized.
Relevance to Treatment of Parkinson’s Disease: Educating professionals who work with people with PD post STN-DBS is an important step to improving the care of speech following this surgery. This education course may impact treatment management of speech following STN-DBS in a positive way. Further, this course may encourage clinicians to seek further knowledge and/or professional collaborations in their care of people with PD post DBS.
Expected Outcome: We anticipate that speech clinicians, physicians, researchers, and people with PD from around the world will have access to this ONLINE educational course. This will help improve the quality of care of speech following DBS.
Project Title: National Parkinson Foundation’s Parkinson’s Outcomes Project Clinical Dashboard
Principal Investigator(s): Peter Schmidt, PhD
Objective/Rationale: The Parkinson’s Outcomes Project is a study of care delivered by Parkinson’s expert neurologists. The study currently includes over 7,000 patients, 150 neurologists, and 13,000 clinical evaluations at twenty centers. Data collected includes demographics, care, and both patient-reported and clinically measured outcomes with the goal of identifying best care practices.
All patients deserve excellent, evidence-based care. The majority of patients with Parkinson’s disease do not have access to a specialist and there is a critical and immediate need to develop, prove, and deliver tools that can help these patients get the care that they deserve. A review of outcomes showed that neurologist care reduces the death rate for Parkinson’s disease by 22%: over 6,000 people with Parkinson’s die annually from preventable complications. To address this critical problem, NPF will develop a feed-forward data system that will enable patients to understand their status and clinicians to focus care on issues most important to their patients.
The goals of this system – the Parkinson’s Disease Clinical Dashboard – are as follows:
- To support the Parkinson’s Outcomes Project operations in the collection of data;
- To empower patients to understand their own status and to set goals for their care;
- To guide physicians delivering care in understanding the status of their patients compared to similar patients seen elsewhere; and
- To deliver evidence-based clinical decision support to clinicians.
Project Description/Methods/Design: Designed with the goal of addressing the complexity of Parkinson’s disease without driving information overload, the Clinical Dashboard will collect and display outcome data, presented versus population-based standards. In addition, the Clinical Dashboard will include an associated patient portal that will allow people with Parkinson’s to record data about themselves and then to see how they compare to similar people who participate in the study.
Phase 1: October, 2013-December 2013: Display definition. The Parkinson’s Outcomes Project investigators will work together with outside advisors on defining the feed-forward, feedback display. In addition, the participant (patient and caregiver) data entry portal will be designed.
Phase 2: January 2014-May 2014: Implementation. The Clinical Dashboard will be built according to the specifications developed during phase 1.
Relevance to Treatment of Parkinson’s Disease: The goal of the dashboard, in the order that we will develop these things, are to deliver:
1. Benchmarking. The ability to evaluate a person and be able to understand how that person is doing compared with other, similar people.
2. Goal setting. Tools to help people to understand how similar people have fared over time – not just where are you today, but where might you be next year?
3. Clinical guidelines. Tools to show what the centers that have achieved the best results in similar patients have done to treat them.
Expected Outcome: The results of this evaluation is reviewed before the clinic visit and is used to inform the structure of the clinic visit, for example, there might be separate structured visits for each of the following situations:
- Everything is ok, and we need to think about the future;
- Everything is pretty good, but there are some minor issues that need tweaking; or
- It is a crisis and we need to focus on addressing a set of specific issues right now.
Today, a physician might spend half a clinical encounter just figuring out if most things are pretty good or not. Sometimes, physicians are distracted from helping to set a care plan by the need to address specific complaints, but then they discover that the complaints are minor issues. On the other hand, sometimes a patient complaint might seem like a minor issue and be dismissed by the physician, only to discover that it prevents the patient from doing something that is important to him or her.
September 2014 Project Update:
In January, 2014, a set of six key metrics were presented to leaders of NPF Centers of Excellence as the basis for center-center comparisons and as the basis for ongoing evaluation. These six metrics were: health-related quality of life (HRQL), caregiver strain, mobility, cognition, falls, and hospital admissions. To establish their validity for use in informing patients of their relative status, an analytical technique was developed for comparing across diverse patient sets by creating tranches across the population, computing results within each tranche, and then computing an equally-weighted sum across a center’s cohort. Example results from this approach are available on request.
These metrics were subsequently applied to analyze individual results. A software system was developed to select individuals by proximity to a selected candidate by minimizing the norm (equivalent to distance in a carteasian representation) in age and disease duration difference. Using this technique, an arbitrary number of the subjects most similar to the candidate can be selected. To date, the typical number used in comparison sets has been 100, providing good resolution when preparing a percentile scale.
Using this approach, the characteristics of populations and individuals can be compared. First a range of observed outcomes for each variable or a weighted sum of the variables in the comparison patient set is computed. Subsets may be computed to represent patients who do or do not exercise, who are on or not on levodopa or other medications, or other variables. An individual may be compared to the entire comparison set or to the subset that represents that individual’s treatment plan. Then, longitudinal results can be examined to anticipate the effect of a change in the treatment plan. This model has been implemented manually. The coding of this model into an automatic algorithm is the next step.
This study is not yet complete however these results represent the scientific foundation of and, we believe, good progress towards the project goal.
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