NPF now offers a new website with information and guidance for clinicians providing evidence-based care to patients with PD, and a reference for medications, symptoms, and terms used in PD.  You can access the site from your computer or from your mobile device, and there are iPhone and Android apps to help you do it.  The toolkit isn’t designed to replace the great scientific and clinical references out there, but rather to give quick answers to common questions and to help you better use other materials.  Also, most sections include educational materials for patients and family members, and this may be the fastest way to find those resources.

Special Features of the App:
• Planning the PD Encounter
• When to refer?
• Overview of the PD physical examination
• First-line medications and dosing

The content of the Parkinson’s toolkit was developed by a steering committee composed of movement disorders neurologists, primary care physicians, and a patient.  While the project was partially supported by industry grants, all the guidance was created and reviewed by doctors and patients.

Visit the Parkinson’s Toolkit website now.

Download the free smart phone app at the iTunes store.

Additional Info:
The management of Parkinson's disease can be complicated, including challenges at diagnosis, in choosing the right medications, and in managing patients through hospitalization.  However, in many circumstances, excellent care can be provided in a primary care or non-specialist setting, and the key is a properly structured encounter, periodically reviewing evolving best practices and recognizing when to refer your patient to a therapist or specialist.

Sponsors:
The Parkinson’s Toolkit is proudly sponsored by:

Recent research has found commonalities among the biochemical mechanisms and/or anatomical manifestations that lead to symptoms across several neurological conditions.  For example, the c-Abl tyrosine kinase, well-known in the cancer community, has recently been implicated in one of the biochemical pathways leading to Parkinson’s disease by Ted Dawson, M.D. Ph.D., at Johns Hopkins, an NPF Center of Excellence.  Conversely, there seem to be anatomical similarities in the structural impact of PD’s -synuclein-associated dementia and that associated with the protein tau.  Many of these common pathways are currently in the early stages of understanding.

The National Parkinson Foundation (NPF) is organizing a symposium to bring together basic scientists currently doing research into the biological pathways that result in these symptoms, to consider targets for therapy, and to strategize around advancing the knowledge from research to practice.  The purpose of the symposium will be to bring researchers together, present ideas on promising avenues of research likely to produce targets for therapies, and develop a consensus on the most promising of these.

Organized by symptom rather than biological pathway, the discussion will be tailored to focus the conversation on translation of basic science to clinical therapy.  Targeting symptomatic relief, the program will not just engage researchers who specialize in Parkinson’s disease but rather will draw on investigators who target pathways to disease that may be common across conditions.

The XI NPF Symposium on PD: Targeting Non-Motor Symptoms will be held November 10-11 and will serve as a satellite meeting to the Society for Neuroscience meeting in Washington, DC. Registration will be limited to 200 persons. For more information, visit www.parkinson.org/sfn.

I was pleased when I was asked to provide a blog on ethics, as this topic has personally intrigued me throughout my career.  “Ethics” per se, is the division of philosophy that deals with issues that pertain to morality, which has such a tremendous significance in everything we do as doctors: caring for patients, conducting research, and teaching trainees.  Ethical or moral behavior of course is a very important topic for any profession, but is perhaps most discussed in the field of medicine.

Ethics, the philosophical science of morality, has been a central interest to thinkers, philosophers, and doctors since the ancient Greek times.  Socrates, Aristotle, Aristippus, Epictetus, and later Jeremy Bentham, John Stuart Mill, and also Immanuel Kant all addressed ethics.  As much as we can enjoy reading the works of these great thinkers, in our everyday life and in medicine, it is probably pragmatic ethics (e.g. John Dewey) or postmodern ethics (e.g. David Couzens Hoy) that would be most applicable.  In his writings, Hoy particularly addressed the powerless, which of course patients belong to, in this sense.

Ethics and conflicts of interest (COI) have long been associated with medicine.  The general view is perhaps one where the good doctor navigates COIs well and resolves conflicts without compromising integrity and morals.  Yet, COIs and morality aren’t entirely synonymous.  Morality should deal with behavior and a code of ethics that has nothing to do with enforceable laws.  In other words you could be a perfectly law-abiding citizen and still be immoral.  Morality, according to its scientific definition, addresses behavior that is within legal limits. 

In our practice, in our teaching activities, and in our research, we do so many things where moral behavior and ethics come into play.  In fact there probably is very little that we do where ethics are not applicable!  A colleague once said that everything we do every day is infiltrated by conflict of interest (COI) and that you cannot ever eliminate COIs.  Of course we hear plenty about COIs such as undue industry influence in continuing medical education (CME) programs, and in research studies, as well as practitioners receiving “freebies” and other favors (creating the urge to reciprocate, perhaps in their prescribing behaviors).  However, those are only a small fraction of COIs in medical profession.  Most COIs we are not even aware of and most don’t necessarily pose a moral dilemma.

When you take out milk from the refrigerator, there are competing interests (i.e. whether you should satisfy your urge to drink now or wait until later, when you may need it more; whether somebody else in your household might need it more; if this will trigger a need to go to the grocery store today, which you really don’t want to do, as opposed to tomorrow when you were going anyway, etc.).

Likewise, in academic medicine, it is critical that while working with students and residents (and making sure they get the education they need), at the same time also focusing on research achievements (which lead to promotion), we do not compromise the quality of medical care provided to our patients. 

Some instances of poor conduct in the recent past have triggered a backlash prompting new legislation.  Once, thus there is state legislation or an apparatus that enforces moral order, the related ethics issue ceases to exist.  For example, should animal experimentation become illegal in a society, it would no longer pose an ethical dilemma (it will become a legal issue). 

On the other hand, as remarked by another colleague, Dr. Joe Jankovic, one cannot achieve 100% ethical behavior through enforcing rules and laws.  No matter how many rules and laws there are, there always will be loopholes, and if willing, individuals who can go around them.  So what can we do?

1. Transparency.  Well, since we already established COIs cannot be eliminated, our only option is to find a way to live with them and manage them the best way we can.  How do we do that?  The very first critical ingredient is transparency.  Appropriate access to vital information bz concerned parties is half the battle.  Also, when I speak of transparency, I mean true actual transparency, access to pertinent data in a way that makes sense to an average patient.

Of course we cannot open up our research folders and patient medical charts to the public.  HIPAA and other regulations as well as research contracts restrict what can be accessed.  However, “de-identified” data should be made accessible to all concerned parties.  Transparency would enable patients to determine how many patients their doctor sees, what their office practices are, what research and teaching obligations she or he may have, including their financial relationships. 

Disclosure of financial relationships is mandatory now for all CME work.  However, patients may also want to know whether their physician, who recommends a certain treatment, is actually on the payroll for the company that stands to financially benefit if more patients are receiving that treatment.  Similarly, a simple, easy to understand list of all professional activities and relationships reflecting potential COIs (financial or otherwise) of each health care provider should be prepared and made available to patients upon request.

Such disclosure would likely preserve, or in some cases, restore the trust between patients and their health care providers, eliminating most concerns about COIs and the potential for immoral conduct that could affect patient care.  Of course disclosure in itself may not guarantee that everyone will all of a sudden become ethical, but disclosure of these data would help advise patients to make choices about their health care providers.

2. Healthcare metrics.  Another important way to keep people honest is by tracking their performance.  If a physician is navigating multiple, complex COIs, yet is providing highest quality healthcare to his/her patients, then we may be less concerned about COIs because ultimately what really matters is their level of care and professionalism.  Of course we would need to have accurate and relevant healthcare metrics in place that are also practical and feasible.  There is an entire branch of science dedicated to this, but patient advocacy groups definitely could push for and help support such efforts.

3. Selection.  No matter what measures we take or regulations we put in place, our best guarantee that future medical professionals will practice medicine in an ethical manner is to select candidates of the highest moral caliber.  Also, as medical educators we have to place a greater emphasis on medical ethics in the training process.

Medicine and morality are intertwined in so many ways.  The Hippocratic Oath illustrates this relationship.  In modern healthcare with so many potential COIs, no matter what regulation and measures we undertake to ensure moral conduct, it probably still is the rigorous process of selection and training that most helps to ensure that our healthcare providers are truly and genuinely driven entirely by their internal sense of right and wrong, as opposed to all the rules and regulations.  Ethics in research and health care will remain an intriguing and important topic for generations to come, and the principles will remain the same as when the Hippocratic Oath was written in Ionic Greek in the late 5th Century BCE: “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.”

Dr. Zoltan Mari received his medical degree from the Albert Szent-Györgyi Medical University (now University of Szeged) in Hungary. After clinical training at the Brookdale University Hospital and Medical Center in Brooklyn, NY, and residency in Neurology at the State University of New York, Downstate Medical Center in Brooklyn, NY, he undertook subspecialty training as a fellow in Movement Disorders and in Clinical Neurophysiology at the NIH Clinical Center in Bethesda, MD. Dr. Mari is now an Assistant Professor of Neurology and Medical Director of the NPF Center of Excellence at Johns Hopkins Parkinson's Disease and Movement Disorders Center.

NPF gratefully acknowledges Piyush Kalakoti, medical student on elective at the Johns Hopkins School of Medicine, for his contributions to this article.

The American Academy of Neurology is soliciting nominations for the AAN Movement Disorders Research Award, and encourages individuals to apply or nominate a colleague.

The Award recognizes an individual for outstanding work in the field of Parkinson's disease or other movement disorders for either a single outstanding contribution or for lifetime achievement. The selected individual will be honored through recognition at the 2012 AAN Annual Meeting in New Orleans.

The award recipient will receive:

• Opportunity to present a 20-minute lecture during a movement disorders scientific session at the 64th Annual Meeting
• A certificate of recognition and $1,500 prize
• Complimentary registration for the Annual Meeting
• Recognition at the Awards Luncheon at the Annual Meeting

For more information, including what they will receive, eligibility requirements, and application procedure, refer to the Movement Disorders Research Award page on the AAN website. Please note that the application deadline is November 1, 2011.

Should you need more information about the Movement Disorders Research Award, please visit the AAN website.

NPF's National Medical Director, Michael S. Okun, and NPF's CIO, Peter Schmidt were co-authors on this article in the June issue of Parkinsonism & Related Disorders.  See our consumer page for advice to share with your patients.

Abstract
There is an ongoing debate about generic drug use for a multitude of conditions including epilepsy, psychosis, hypertension, post-organ transplantation, and several infectious diseases. Most of the concerns involve drugs with narrow therapeutic indices. There is a heightened attention to health care costs and macroeconomic policy as well as microeconomic business decisions that may impact the use of generic drugs. The issues surrounding generic substitution for chronic degenerative conditions such as in Parkinson’s disease (PD) continue to be controversial subjects for physicians, pharmacists, patients, Medicare/governmental insurance programs, and for private insurance companies. The United States Food and Drug Administration (FDA) requires that generic drugs meet a standard for bioequivalence prior to market approval, but this may not translate to therapeutic efficacy or to overall patient tolerance. In this review we will address issues related to the use of generics versus branded drugs in PD, and the potential impact substitution of generics may have on patients and on clinicians. Having proper documentation may help in deciding the appropriate usage of these drugs in PD. Medicare, governmental run health care systems, and third party insurance companies should in a complex disease such as PD, allow physicians and patients the chance to properly document the superiority of brand versus generic approaches. Currently, in the U.S, and in many countries around the world, there is no obligation for payers to respect these types of patient specific bedside trials, and there has been no standardization of the process.