BBK Worldwide^® Blog

Rounding out our Study Voices panel for BBK's keynote “Do Engagement Tools Live Up to Their Hype?” is panelist, Annie Finstein. She is looking forward to sharing her experience as a patient and participant in a clinical research study on February 19 at the SCOPE conference. 

Annie was diagnosed with Crohn's disease in 2000 at nine years old. After trying all available medications approved for pediatric patients at that time, she participated in a pediatric study at Massachusetts General Hospital in Boston. Now in her late 20s, she enjoys spending time at the beach, hiking, cooking and gardening at her home in Boston. Annie is committed to making a difference and connects with other patients impacted by Crohn’s disease by running half marathons with Team Challenge, the Crohn's & Colitis Foundation’s endurance training and fundraising program.

What was most rewarding to you as a participant in a clinical research study?

It was most rewarding to know that I was helping advance the treatment of Crohn’s disease for pediatric patients, and that my participation might not only help me but also other kids suffering from inflammatory bowel disease (IBD).

Supporting rare disease research is a big part of our work here at BBK and rare disease recruitment is an expertise that our sponsors and CRO customers have come to expect from us.

While progress has been made to improve the lives of patients with rare disorders, there is much that still needs to be done to reach patients, further research, find new treatments and improve outcomes. Our most recent eBook, “Rare Disease Research. What’s Next?” is a collection of insights from a variety of rare disease stakeholders, including Roberta Carson, Founder and President of Zaggo, Inc. – a national nonprofit devoted to helping patients and families be more engaged members of their medical teams.

Late last month, BBK Worldwide^® 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.