Rare diseases: Specific approach in patient recruitment for clinical studies, an interview with Jarrett Lowe, Campaign Manager at BBK Worldwide
Hi Jarrett, you have been the lead project manager on different rare diseases campaigns for adaptive patient recruitment at BBK Worldwide, the global leader in patient recruitment for the clinical trial industry.
We would like to share some insights about the very specific topic of rare diseases. How many studies in the field of rare disease has BBK already conducted?
With rare disease trials receiving more and more attention from the pharmaceutical industry, enrollment for these types of studies becomes a key challenge for companies. BBK has vast experience with rare disease studies, working closely with sponsor study teams to overcome enrollment barriers for these difficult to find patient populations.
There are about 8,000 rare diseases. Some of them affect only a few patients. How many patients have to be enrolled in average per study?
BBK looks into numerous factors when evaluating the clinical landscape for a rare disease. These patient populations tend to be difficult to access, so strategic and adaptive planning is essential for enrollment success. Each rare disease has to be viewed as unique, and there are many variables that come into play for these studies that are far different from more common diseases. BBK views each rare disease protocol and patient population on an individual level, as the enrollment goals and objectives of sponsors can have a wide range. For the more rare indications, enrolling just a few patients from recruitment efforts would be considered successful.
What is the average enrollment rate in the field of rare diseases? Each study/rare disease indication is viewed as unique and on an individual basis. While there are similarities among some trends in the field, they simply cannot be applied from one indication to another.
What are some proven strategies to handle these retention challenges?
Retention for rare disease studies is less of an issue than for studies of more common indications, for a number of reasons. For rare indications in which there are no current treatment options available, clinical trials are sometimes the only option for patients to receive a potential treatment. Retention issues would more commonly arise for indications in which there are treatment options available, or if the clinical trial is offering a placebo arm.
BBK works with sponsors to head off these retention issues by making study visits as easy and simple as possible for patients, their families, and site staff by offering study visit reimbursements and extensive travel programs that take the worry and complexity out of getting to and from study visits.
How can social media be used to help patient recruitment in a rare disease study?
Social media can be a powerful tool in accessing rare disease patient populations. BBK has had great success working directly with advocacy groups that specialize in rare diseases. Rare disease patient populations are some of the most well-informed individuals regarding their indication and the treatment options available to them. Working closely with distinguished advocacy groups can be a very successful pathway in communicating to these patient populations, and the rare disease communities as a whole.
Thank you, Jarrett!
Author: Cécilia Mesa, 25.06.2014
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