ImproveCareNow Research


Spring 2020 LIVE Online Community Conference - Pathway to the Future

On Friday, April 3, ImproveCareNow will host a LIVE Online Community Conference (LOCC). The LOCC will be preceded by a late breaking session on Telemedicine in Response to COVID-19 at 9:30am ET (8:30am CT, 7:30am MT, 6:30am PT) and the main event will begin at 10:30am ET (9:30am CT, 8:30am MT, 7:30am PT). 

All are welcome to join this free online event where we will be exploring ImproveCareNow's Pathway to the Future and how we can all continue to work together to transform health, care and costs for all children and adolescents with Inflammatory Bowel Disease.



Research demonstrates need for greater support for the IBD caregiving community

The National Alliance for Caregiving (NAC) has released a report on caregiving of individuals with Inflammatory Bowel Disease (IBD). Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD – Crohn’s disease and ulcerative colitis.

The full results of the survey can be viewed online at http://www.caregiving.org/ibd


Science is the Voice of Reason

Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!


Join Us - Spring 2019 Virtual Community Conference

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 2 between 6 and 8pm eastern for our Spring 2019 Virtual Community Conference. Read more to see the agenda for this event.


Healthy Mind Healthy You: A Study of Mindfulness - Now Open

Most people experience stress at some point in their lives. Stress, especially when severe, can not only make you feel bad, it can also worsen existing health problems like heart disease, type 2 diabetes, obesity, high blood pressure, depression, and even cancer.

Healthy Mind Healthy You is a new study about how mindfulness can help people cope with stress. Funded by the Patient Centered Outcome Research Institute (PCORI) and involving 19 Patient Powered Research Networks (PPRNs), Healthy Mind Healthy You will be able to study the effects of mindfulness on a wide variety of populations and conditions.

This study is for members of ImproveCareNow. It includes patients, caregivers, and family members.




Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


ImproveCareNow Partnering to Survey Caregivers of Individuals with Inflammatory Bowel Disease

The National Alliance for Caregiving, in partnership with the Crohn's & Colitis Foundation and ImproveCareNow, is launching a first-of-its-kind survey of Inflammatory Bowel Disease (IBD) caregivers. The survey, which is being conducted by researchers from Crimson Research at New Mexico State University, is seeking feedback from family caregivers of children and adults living with Crohn's disease or ulcerative colitis, the two major types of IBD. "Through this survey, we hope to capture the power behind these unpaid friend and family caregivers and to articulate what they are doing so that they can serve as a model for caregivers in other communities," explains C. Grace Whiting, President and CEO of the National Alliance for Caregiving. 

Take the Caregiver Survey >>


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