CCFA – Patient Participation for Research Registry

http://www.ccfa.org/trials/studies/CCFAPartners

 

 

The Crohn’s & Colitis Foundation of America is in the process of developing CCFA Partners, a new program aimed at enlisting patient and family participation in activities to further increase our understanding of Inflammatory  Bowel Diseases (IBD). Specifically, CCFA is assessing the feasibility of building a long term patient registry to support IBD research.

CCFA sponsors many targeted research projects on an ongoing basis and one of the challenges is identifying IBD patients who are eligible to participate in clinical studies. By establishing a registry of patients from across North America, we can broaden participation and inform patients who are members of the registry of upcoming projects which may be of interest to them.  Increased patient involvement can lead to more rapid research progress by shortening the time required to compile sufficient research data to complete the project(s).

At this time, we are investigating the feasibility of establishing such a patient registry by soliciting opinions and recommendations about how to organize the registry from a small, randomly chosen number of patients and/or their family members, and/or other CCFA members and supporters. You may be contacted by email or by direct mail in the near future and asked to complete a brief online survey by our Data Center at the School of Medicine of the University of North Carolina at Chapel Hill. These email survey invitations are sent from pasp_cgibd@med.unc.edu and they contain a direct link to the survey in the body of the email. We hope you will support this most important initiative.

If you have questions, please contact us at: info@ccfa.org

The investigators of CCFA Partners are:
Lloyd Mayer, MD
Chair, National Scientific Advisory Committee

Bruce Sands, MD, MS
Chair, Clinical Research Alliance

James D. Lewis, MD, MSCE
Vice-Chair, Clinical Research Alliance
Chair-Elect, National Scientific Advisory Committee

Sunanda Kane, MD
Chair, Patient Education Committee

Updated: 6/3/10

One response to this post.

  1. If you have been diagnosed with either Crohn’s or Ulcerative Colitis please take a moment to participate in this brief online survey.

    THIS IS NOT THE SAME SURVEY AS THE MGH NORTHPORT IBD STUDY/SURVEY OR THE NORTHPORT PROJECT COMMUNITY HEALTH QUESTIONNAIRE, (many of you have already completed).

    This is a survey created and sponsored by The Crohn’s and Colitis Foundation of America (CCFA). This project could result in a nationwide registry of IBD (Inflammatory Bowel Disease) patients, which in turn can help in discovering the causes or triggers to these diseases.

    Both the EPA and DOH discovered the first Northport Crohn’s and Colitis cluster in 1992. In the 20 years since, 26 new residents have been diagnosed with either Colitis or Crohn’s…. also, in those same 20 years, no effort by either our State or Federal agencies have been made to utilize the continued cluster of these rare diseases and the possible link to the known heavy metal toxins the community has been exposed to for decades.

    Unfortunately there is no cure for either Colitis or Crohn’s…yet. However, like any disease, once you find the cause you have found the cure.

    The impact of the debilitating effects of these diseases may have taken away your youth, your health, and quite possibly your overall quality of life…but by participating in this survey you can turn the negative impacts these diseases have had on your life into something positive – information desperately needed for medical research and epidemiological studies that could uncover the cause(s), create a cure, and protect the health of future generations.

    Please take just a few minutes to complete this survey…think of how many lives your participation will impact.

    Don’t put it off – do it now……. http://ccfapartners.org

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