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IBD Partners Study Update
 
Keeping you up-to-date with the network!
 
 

New Name. New Look. New Features!

IBD Partners, formerly known as CCFA Partners, has introduced a new name, new look, and new features.

A new name emphasizes IBD Partners' mission to empower IBD patients, researchers, and healthcare providers to Partner in finding answers to research questions to improve the health and quality of life for patients living with IBD.
New and improved health tracking graphs track more health measures - including pain, fatigue, and anxiety - on a daily basis. You can even add your own unique events and connect to your favorite mobile health app or device.
Enhanced research prioritization to more easily sort and view research ideas that patients submit and vote on; descriptions of study activities; and easy-to-understand summaries of published research. The new features also allow you to more easily propose your own research ideas.
A personal dashboard where you can easily view your personal health information, notifications, and badges, as well as a snapshot of what is happening within the network.

Please take note, our email address has changed along with our name! We will now be contacting you from info@ibdpartners.org.

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Citizen Scientist Spotlight

Meet Samantha Conley!

"I want to help people living with IBD live a better life through better management of symptoms."

Samantha Conley is both a patient member of IBD Partners (previously "CCFA Partners") and an Inflammatory Bowel Disease (IBD) researcher. She recently partnered with IBD Partners to complete a project for her PhD dissertation on how symptoms cluster in IBD. You can read a full summary of her project here. We also caught up with Samantha to ask her a few questions about her IBD journey and about her research project:

Tell us a little about yourself.
I have a PhD in nursing from Yale University, and I work as a nurse scientist. My interest is in symptom management in people with IBD. I want to help people living with IBD live a better life through better management of symptoms. I am interested in the symptoms of pain, fatigue, depression, anxiety, and sleep disturbance. I also have IBD.

What drove you to join IBD Partners?
I love participating in IBD research. I think that through research we can get answers to many of the challenges of living with IBD. IBD Partners provides a unique and wonderful opportunity to contribute to research that will help us all - patients, clinicians, and researchers - better understand IBD.

How has IBD influenced your career choice?
Having IBD has greatly influenced what I research. Early in my nursing career, I was involved in diverse research projects. I kept returning to IBD research, because people with IBD would come to me asking for help managing their symptoms. Having IBD has given me a different perspective in my work as a nurse researcher, as I have first-hand knowledge of the day-to-day life with the disease. It provides me the passion I need to work on research in order to help people with IBD better manage symptoms. [...]

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We are making great progress together. Thanks!
 
15,680 patients strong
24 studies published in research journals
21 studies are in progress

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