Blog

Focus 5: Amplifying the Study Voice - Capturing the Sentiment of the Study Community

Posted by BBK Worldwide on Wed, Apr 3, 2019

When examining the clinical trial experience, there’s nothing more meaningful than hearing directly from those closest to the study – patients, caregivers, physicians, and study sponsors. This year BBK launched its Study Voices initiative. Study Voices is designed to capture the sentiment of the study community at a time when the clinical research industry is growing and evolving. From innovative technology, to protocol design, and everything in between, Study Voices captures the perspectives of those closest to the clinical trial experience, offering insight that can be leveraged for action.

“Focus 5: Amplifying the Study Voice” highlights five members of the study community as they share their perspectives on the clinical trial experience.

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Topics: Patient Engagement, Rare Disease, Pediatric Studies, Informed Consent, Patient Experience, Study Voices

New eBook: Rare Disease Research. What’s Next?

Posted by BBK on Thu, Feb 23, 2017

Nearly a year ago, we released our first guide on rare disease clinical research. In it, we were looking to address some important questions facing the people who are committed to improving the lives of patients with rare disorders. While much progress has been made, it is critical that those of us in the health care and life sciences industry remain keenly aware of all that’s being done to further research and improve outcomes. In our latest eBook, “Focus 5: Rare Disease Research. What’s Next?” we reached out to industry experts for their insights on this evolving clinical research landscape.

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Topics: Patient Recruitment, Patient Engagement, Rare Disease, Clinical Research

Guest Spotlight: Improving Patient Engagement

Posted by BBK on Thu, May 5, 2016

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?”

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Topics: Patient Engagement, eBook, Rare Disease, Rare Disease Research

Guest Spotlight: Genetics and Discovery in Rare Disease Research

Posted by BBK on Fri, Apr 29, 2016

“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.”

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Topics: eBook, Rare Disease, Rare Disease Research

Guest Spotlight: Appreciating Every Patient’s Experience

Posted by BBK on Tue, Apr 26, 2016

“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.”


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Topics: eBook, Rare Disease, Rare Disease Research

New eBook: Industry Insights on Rare Disease Research

Posted by BBK on Tue, Apr 12, 2016



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.

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Topics: Patient Centricity, Rare Disease, Clinical Trials, Rare Disease Research

Thoughts from Rare Disease Day: Moving Forward and Raising the Patient Voice

Posted by David Kerner on Thu, Mar 17, 2016

A few weeks ago, we attended NORD’s 7th Annual Rare Disease Day in Boston. People impacted by rare diseases, including patients and patient advocates, industry thought leaders and legislators, gathered at the State House to help raise awareness of the impact rare diseases have on the lives of millions of people in the US and around the world.

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Topics: Patient Centricity, Rare Disease, Clinical Trials

Listen Now - Rare Disease 20/20: A Look at the Challenges and Opportunities in Rare Disease Clinical R&D

Posted by BBK on Tue, Mar 15, 2016



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.

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Topics: Webinars, Patient Advocacy, Rare Disease

Adaptive Recruitment Strategies for Rare Disease: Part III

Posted by BBKWorldwide on Thu, Aug 20, 2015

Part I of our blog series on adaptive patient recruitment focused on the importance of early support. Part II looked at how to best analyze investigator resources to optimize patient recruitment efforts, including cultivating integrated relationships. Today we wrap up our rare disease series on recruitment with two final tactics that can yield strong results.

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Topics: Rare Disease

Analyze Investigator Resources When Recruiting for Rare Disease

Posted by Maria Cipicchio on Wed, Jul 1, 2015

As we discussed in part I of our blog series on adaptive patient recruitment, the rare disease community is constantly striving to invest in developing new treatments. While there is a huge unmet need in this area, there are recruitment tactics that effectively provide support. Beyond the introduction of an early support program, which Jaime Cohen discussed in our previous post, there are additional strategies that can assist in higher recruitment numbers for rare disease. In part II of our series on rare disease we explore further.

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Topics: Patient Recruitment, Rare Disease