Day 1 :
Keynote Forum
David A Pearce
Sanford Research, USA
Keynote: Need for patient registries for rare disease clinical trials and how to integrate them into the electronic medical record
Time : 10:05-10:35
Biography:
David A Pearce heads the leading lab in Juvenile Neuronal Ceroid Lipofuscinosis (Batten disease) research at Sanford Health. He has been researching Batten disease since 1997. His research has led to the first clinical trial for Juvenile Batten disease and has published over 100 research papers. He also oversees a national registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS). He has organized rare disease workshops for the National Institute for Neurological Disorders and stroke arm of the National Institutes of Health and is currently a member of the executive committee for the International Rare Diseases Research Consortium (IRDiRC). In his role as President of Research at Sanford, he is responsible for overseeing the development of research programs across Sanford’s nine-state footprint, including more than 250 researchers, eight research centers and more than 300 ongoing clinical trials
Abstract:
Rare diseases affect an estimated 350 million people worldwide, or 1 in 10 people, and approximately 7000 different rare diseases exist throughout the world today. These are striking numbers, especially considering that 90% of those affected with a rare disease are treated with off-label prescriptions, and less than 1% of rare diseases have an FDA approved drug. Families affected with rare diseases often have little support to turn for information about treatments, support or current research. Researchers and physicians studying rare diseases frequently lack the amount of patient information needed to further their research, in turn inhibiting development of new therapeutics for treatment of rare diseases. Clinical trials for rare diseases are challenging because the patient population is so small, and participants are difficult to find. In 2010, Sanford Research started the Coordination of Rare Diseases at Sanford or CoRDS to try and curb the lack of centralized, collated and available patient information. CoRDS serves as a national rare disease registry that connects rare disease patients with researchers, physicians, patient advocacy groups, other rare disease families and genetic counselors. The ability to have a database of rare disease patient information is key to accelerating research in rare diseases that affect only a few people worldwide
Keynote Forum
Dave Anderson
Syte Logix Inc., USA
Keynote: Evolving visual analytics for better clinical decisions
Time : 10:35-11:05
Biography:
Dave Anderson is the Founder, CEO and President of Syte Logix. As a healthcare analytics and security executive, he brings his extensive experience in data analytics, cyber-security, risk management, patient privacy, and connectivity to the growing challenges of the MedTech and clinical data management market. His analytic and data exploration models create new opportunities for customers and partners to significantly improve the ROI around clinical research, and get products to market in a faster and more secure manner. He is a frequent publisher and speaker on the combination of MedTech analytics and security, and bringing the speed of innovation into the industry
Abstract:
The exponential growth in digital data to support compound research, new drug development and clinical trials in advancing patient care provides distinct challenges to a clinical researcher. However, this also presents tremendous opportunities for new areas of exploration, cost savings and revenue growth to organizations that are willing to visualize their data in new ways. Size and complexity of clinical data matters, and unfortunately today’s visualization technology does not deliver the critical functionality for the researcher to quickly understand how data is connected and the dependencies between seemingly disparate data sets. Common dashboard visualizations do not provide the necessary context into how data is connected and what insights can be drawn based on these connections. The opportunity in order to meet the increasing board pressures to reduce cost and increase ROI, visual analytic tools must evolve to easily support all of the possible data available to researchers, including complex semi-structured, unstructured, and 3rd party data, and enable them to better understand which data is connected and how those data sets are related. This evolution provides the greatest opportunity for companies to use data in a more strategic way to improve value delivered to patients and shareholders. In this session, we will introduce and provide a software demonstration to show: How very large, dense, complex data sets can be quickly and efficiently integrated into a visual analysis program; a set of visualizations that explore the connections and dependencies across data sets; a new method to visually analyze data, enabling a deeper, contextual exploration of data and; How customers adopting this new method are realizing tremendous cost savings and improving their competitive position
Keynote Forum
Edward M O’Sullivan
Cork University Hospital, Ireland
Keynote: Headache management in community pharmacies
Time : 11:20-11:50
Biography:
Edward M O’Sullivan Graduate of University College Cork Medical School General Practitioner in Bishop town, Cork Clinical Director Headache / Migraine Clinic, Department of Neurology, Cork University Hospital, Medical Advisor to the Migraine Association of Ireland
Abstract:
Many headache patients self-medicate and choose their preferred analgesic from a range of acute analgesics available on the high-street and from community pharmacies. Little is known about their presenting symptoms, headache diagnosis and their preferred treatments. A questionnaire was distributed to community pharmacies in the Munster region of Ireland and was administered to patients requesting treatment for headache. A total of 1023 completed questionnaires were received, 76.7% (n=765) were female and 51.8% were aged 18-39 years. 53.3% (n=542) were not previously diagnosed by a GP and 49.6% (n=502) had never sought advice from a pharmacist. According to the symptoms described, 32% (n=327) had episodic migraine and a further 15.2% (n=155) had probable episodic migraine. 30.3% (n=310) had tension type headache. 10.7% (n=105) had chronic daily headache. Codeine based products were the preferred treatment choice for 43.1% (n=441). Triptans were the most effective, 68.6% (n=166), in those for whom they were previously prescribed. 11.8% (n=121) had medication-overuse. The community pharmacist is an important resource in headache management. An expanded role incorporating best practice management guidelines has the potential to improve the outcomes for many headache sufferers.
