For this week’s Guest Blog Spotlight and in recognition of Clinical Trials Awareness Week, we’re sharing insights on improving patient engagement from Rare Genomics Institute and Rareshare.org, and contributors to our recent Rare Disease eBook. We asked Rare Genomics CEO Paul Schindler, Director of Strategic Alliances Nolin Huddleston, and Rareshare.org’s Head of Operations and Development Alice Cheng, “How can sponsors take a more active role in building and supporting rare disease communities?”
“We know today that we can define the root cause of genetic diseases. We have a growing toolkit with which to we can aggressively tackle and modify the underlying defect, which ultimately I believe will lead to benefits for the patients, improving their quality of life, and potentially for some, it may lead to cures.”
“When so many rare disease patients commit themselves to becoming experts of their condition, sponsors must also strive to understand and collaborate with the patients they wish to engage.”
Our “Focus 5” eBook series, in which we share the insights of five thought leaders on a variety of industry topics and trends, has been incredibly well-received, and we’re pleased to issue the latest installment in the series on Rare Disease Research. Patient advocates, researchers and physicians from NORD, Xenon Pharmaceuticals, Landon Pediatric Foundation, Rare Genomics Institute and RareShare.org all weigh in on where we are today and what we can do to help advance research.
Late last month, BBK hosted the webinar Rare Disease 20/20: A Look at the Challenges and Opportunities in Rare Disease Clinical R&D giving our listeners the opportunity to gain insights from thought leaders in rare disease patient advocacy and orphan drug development.
BBK Worldwide is very excited to be participating in the Cambridge Health Institute’s 7th Annual SCOPE Summit for Clinical Ops Executives. Taking place February 23 – 25 in Miami FL, SCOPE will offer three days of in-depth discussions addressing the operational, technological and data-related aspects of clinical trial planning and management, with 12 different conferences, 4 pre-conference workshops and 2 symposia.
To raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients and their loved ones, the National Organization for Rare Disorders (NORD) established Rare Disease Day® in the U.S. almost seven years ago. Since then, people all over the world have come together to inform the public and engage with policy makers, researchers, health professionals and more, affecting positive change for all those impacted by rare diseases.
It has become clear that you cannot discuss the future of global clinical research and its innovations without talking about South Korea. In our previous blog post, we delved into South Korea’s clinical research infrastructure, and found that it is among the best-equipped countries in the world for hosting clinical trials – with substantial governmental support, joint IRBs, and streamlined drug application and approval processes. In the second half of this series, we will discuss the prevalence of mobile health solutions in South Korea to determine what aspects of BBK’s mobile health initiatives resonate most with the population.
Today’s post will feature insights from our strategic global alliance partner at Inje Paik Clinical Trial Center in South Korea. Pioneers of the clinical R&D industry in the region, Inje Paik is transforming the clinical research study groundwork through innovative initiatives and programs, exclusive and robust investigator and patient networks, and creative strategies and technologies.
Despite the rising popularity of mobile health applications in clinical trials throughout the globe, their use in Latin America is still rare. However, these tools have enormous potential for use in clinical research, patient monitoring, compliance, patient support, diagnostics, and preventions. We’re going to look into the benefits of using mobile health applications and their increasing prominence and demand throughout the region.