Thursday, May 14, 2009

Attention MS and RA Patients, NIH would like your input

If you have a chronic illness, you should go to and complete the survey there. I read about this on Duncan Cross' blog. He did it in about ten minutes, but it took me much longer!! Seriously: do it now.

The survey is part of an NIH-funded research study, and they need all the responses they can get. This is how Jennifer Jaff (one of the people working on the project) explains it:

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at .

If you have a chronic illness such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so. If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.

Thank you.


  1. Lisa,
    Thanks for letting me know! I took the survey. I hope it helps!


  2. Hi Lisa,

    Very interesting post, thanks.

    Hope you are doing well and having a great weekend.



  3. Hi Lisa,

    Thank you for your comment on my blog - I look forward to hearing more about your experiences with RA.

    Your blog is such a treasure trove of resources - I am so happy to have found it. Both it and its links will provide me with much reading and learning in the future. (I'm only recently realizing the benefit of hearing from others who live with chronic illness/disability beyond RA.)

    Adding this survey to my list of things to do!

    RA Guy