Easing the Rare Disease Patient’s Burden in Clinical Trials with Innovative Technology

Clinical Trials, Life Sciences, Patient Recruitment and Retention, Pharmaceutical,
  • May 08, 2018 | (Tuesday) 11am EDT (NA) / 4pm BST (UK) / 5pm CEST (EU-Central)
  • 60 min

In this webinar, you will learn how technology can influence rare disease clinical study design, increase the speed of research and thereby reduce the overall research burden. Our experts will introduce and educate clinical teams on how innovative technology can impact the future of rare disease clinical development.

Studies and clinical trials in the rare disease space are complex and, have novel designs or new endpoints. They are often unique in design, cost and revenue structures. When you factor in how inherently different each patient’s disease state, age and geographic location, finding an experienced research site can be difficult. While these studies may present some research challenges, structuring them with the right technology can get clinical teams over the study design hurdles and help improve patient recruitment and retention by decreasing trial burden.

Discussion topics include:

  • Decreasing trial burden on patients via patented clinical care technology
  • Increasing study retention using mobile and connected devices
  • Speeding up rare disease research through real-time, device-based data collection


Scott Schliebner, MPH, Vice President, Rare Diseases, Scientific Affairs

Scott Schliebner, MPH, Vice President, Scientific Affairs – Rare Diseases, is a clinical strategist with a more than 20-year background in clinical development specializing in rare diseases and orphan drugs. His breadth of experience encompasses all trial phases; a variety of study designs; interventional and observational studies; and numerous investigational products (IPs), including small molecules, biologics, gene therapies, and enzyme replacement therapies. His therapeutic expertise focuses on rare tumors, rare hematologic disorders, neuromuscular diseases, inborn errors of metabolism, and lysosomal storage disorders.

Mr. Schliebner has served in leadership roles across the biotechnology, non-profit, and CRO settings. He has developed close working relationships with several rare disease research consortia, patient advocacy organizations, study research groups, and key opinion leaders. He is regularly asked to speak on patient-centric approaches, leveraging medical informatics and new strategies to develop rare disease therapies in emerging markets. He is a member of the Drug Information Association (DIA) Rare Disease Planning Committee, holds an MPH from the University of Utah, School of Medicine, and completed a Graduate Research Fellowship at the National Institutes of Health.

David Turner, MS, CISA, CEO/Founder, Paraellel6, a PRA Health Sciences Company

With 20+ years of executive, operational, and engineering experience managing small and mid -size teams and businesses in the technology and services space, Mr Turner has served in multiple capacities and executive leadership positions including the board of directors for technology and services companies in the US and abroad. He founded several companies and is the primary inventor for several patents with a continued focus on IOT, product excellence, and product compliance in several regulated industries including clinical, healthcare, and federal.

Mr Turner’s primary focus has been executive leadership, entrepreneurship, product innovation, packaging, pricing, and overall market direction in the enterprise software and enterprise services space. He holds a bachelor’s degree in economics and a master’s in information systems from Louisiana State University and has attended programs at the Anderson School of Business, UCLA and the Aji Network LEIP program. While in Silicon Valley, Mr Turner held leadership roles at Liberate Technologies, DemandTec, and MobiTV. He is the CEO and founder of Parallel6, a PRA Health Sciences Company, and the inventor of Clinical6 an mClinical platform that serves the pharma and healthcare sectors.

Who Should Attend?

  • Those interested in patient-centric approaches to facilitate clinical research
  • C-level and senior professionals from biotechnology companies involved in the research and development of orphan drugs
  • Procurement and outsourcing professionals with a focus on rare and orphan disease
  • Senior professionals from biopharmaceutical companies working on rare disease compounds

Relevant job functions include:

  • Research & Development
  • Clinical Affairs
  • Clinical Research
  • Clinical Pharmacology
  • Clinical Operations
  • Medical Affairs
  • Project Management

What You Will Learn

  • How patented clinical care technology can decrease the burden of the trial on the patient
  • How mobile and connected devices can help to increase patient retention
  • How to accelerate rare disease research through real-time, device-based data collection

Xtalks Partners

PRA Health Sciences

PRA Health Sciences delivers innovative drug development solutions that improve patients’ lives. Our people love what they do, working tirelessly for clients across all phases and therapeutic areas. With 13,000+ employees covering 85+ countries, we provide an impressive global presence and in-depth knowledge of local regulations, standards of care and cultural customs.

With a wealth of experience across neurological, psychiatric, and analgesic drug development, including pediatric and rare indications, PRA Health Sciences is an industry-leader in providing innovative clinical research solutions. PRA has carried out the pivotal trials leading to the approval of 20 drugs for the treatment, prevention and cure of neurological, psychiatric and pain disorders under the expert guidance of the 15+ Board Certified Neurologists and Psychiatrists we have on staff. We are dedicated to gathering quality, actionable data to advance clinical research, with a strong focus on the patient journey.

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