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.
Partnering with advocacy groups is a vital component to any clinical trial outreach effort. The approach to working with advocacy groups has changed in recent years. It is not just about the one connection you may have with one organization. These days it’s about working with the condition community as a whole for one common goal. Advocacy groups often have direct connections to people affected by a condition and can be highly beneficial to enrollment throughout the patient recruitment process.
Today is Rare Disease Day. Launched by EURORDIS and its Council of National Alliances in 2008, this annual event has grown to include a record-breaking 84 countries from around the world that have come together to raise awareness among the general public and decision makers about rare disease and its impact on the lives of patients.
This week's blog comes from our friend Christel Aprigliano of thepefectd.com. Thank you for contributing!
Today is World Cancer Day. Eighteen months ago, my dear friend Sarah Montgomery died of colon cancer and I posted the original “I Hate Cancer” blog. I still miss Sarah very much, but she was only one of many people I mentioned in that post. Since then, my friend died from her metastatic brain cancer, my aunt died from adenocarcinoma, and every one of my friends then in treatment for breast cancer has survived and is doing very well. One even gave birth to her third child.
"I Wish I Had Breast Cancer"
Meet Kerry Harvey. 24 years old. And diagnosed with pancreatic cancer – a cancer with which she only has a 3% chance of living another 12 months. Kerry wants you to know that she suffers from “cancer envy” (Pancreatic Cancer Action). She never imagined she’d feel envious of someone suffering from breast cancer, a condition with an 85% survival rate, but Kerry faces the grim prognosis of metastatic pancreatic cancer, a condition with an average life expectancy of up to six months and one that only receives 1% of research funding.
“Yes, the strap line is hard hitting and may even offend someone but it does compel you to read on – which is what we need people to do if we are to change the fortunes of pancreatic cancer (Ali Stunt of Pancreatic Cancer Action).”
If you're not putting your patients first, someone else will. Yesterday, BBK hosted a webinar on patient centricity in clinical research. The webinar, Patient-centric to the Core: Setting a New Standard for Engagement Strategies in Clinical Research, addresses the topic of how patient centricity is no longer a nice-to-have; it is a critical component of any study's success.
If you’re not putting your patients first, someone else will. Patient-centricity is no longer a nice-to-have; it is a critical component of any study’s success. Thoughtful and effective patient engagement and retention strategies should be employed throughout the entire clinical trial process – and the patient’s contribution to clinical research and the advancement of treatment options cannot be underestimated. Regardless of the inherent complexities of study management, clinical trial sponsors have an obligation to ensure patients have the best clinical trial experience possible.
Utilizing social media in clinical research is a hot topic in the clinical R&D industry and many pharmaceutical companies are rightfully beginning to take note. According to a survey by the Pew Research Center, 85% of U.S. adults use the internet and 72% of those users say they have looked online for health information within the past year; however, The Tufts Center for the Study of Drug Development reports that only approximately 10% of trials reportedly use social media to recruit patients. Furthermore, BBK Worldwide research shows that pharmaceutical sponsors who use social media in their clinical trials are gaining a strong competitive advantage in terms of patient recruitment and retention.