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Author Topic: Online Non-Profit Arthritis Study Seeks Volunteers  (Read 920 times)

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Offline Aaron_Wolfe

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Online Non-Profit Arthritis Study Seeks Volunteers
« on: September 14, 2004, 09:14:19 PM »
Dear readers of this group:

I hope you will find this information interesting and useful, and that you will consider participating in research at The International Databank for Rheumatic Diseases. I apologize if this message is not appropriate.

If you have any questions, please contact me directly at [email protected]

Thank you,

Aaron Wolfe

Arthritis Research Needs Your Help
If you have rheumatoid arthritis, osteoarthritis, fibromyalgia or another rheumatic disease--anything that you would see a rheumatologist or joint specialist about--you can help improve the treatment and outcomes of these conditions.


What is the INDB?
The International Databank for Rheumatic Diseases (INDB) is a non-profit research databank for the study of arthritis and rheumatic conditions.

The INDB collects data directly from persons who have these problems. The primary goal of INDB research is to advance knowledge about the causes, costs, treatments, and results of treatments related to rheumatic conditions. Another important goal of the INDB project is to stimulate research and study by health professionals by making INDB data available for medical research.

Every six months more than 10,000 people contribute to this important research by volunteering approximately an hour of their time to answer questions about their condition and how it affects their lives. This is done by computer online. All information provided remains completely confidential.

How to enroll in INDB research:
Visit us on the Web at http://www.webindb.org

Answers to common questions about INDB research:

Why should I participate?
People volunteer to participate in research for a variety of reasons. The primary reason people give for INDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. INDB research allows you to volunteer in an important way.

How often will I get a questionnaire?
Every 6 months. Questionnaires take approximately 30 to 60 minutes to complete. Returning your questionnaire within two weeks makes you eligible for a US$1,000 prize given to three people chosen at random.

Does it cost anything to participate?
No.

Who will see my questionnaire and information about me?
Only the INDB research staff. Once your information is in our research Databank your name is removed for research purposes. Researchers using the Databank for medical research cannot identify you. We have been collecting arthritis data for more than 25 years, and during that time, no outside person has ever had access to anyone's name.

What kind of questions will you ask?
We ask about: Pain. Functional and work ability. Disability. Joints that are affected. Symptoms. Treatments with medications and surgery. Side effects. How you manage with your illness.

What happens to the information I provide?
The information is entered into a computer databank for use by medical researchers. Researchers describe their findings in medical journals and presentations at national and international meetings. That way, all doctors who treat arthritis are able to receive the benefit from the research, helping them to provide better medical care to people with arthritis and similar medical conditions.

Which rheumatologists work with this project?
More than 800 rheumatologists from around the world have helped. Dr. Fred Wolfe is the Project Director.

For more information:
Please visit out web site, www.webindb.org, or email email [email protected]
« Last Edit: September 14, 2004, 09:14:54 PM by Aaron_Wolfe »

Offline ATsoccergirl

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Re: Online Non-Profit Arthritis Study Seeks Volunt
« Reply #1 on: September 20, 2004, 04:53:05 PM »
I think this is a really great opportunity so I bumped it back up so that more people could see it.
« Last Edit: September 20, 2004, 06:23:48 PM by ATsoccergirl »
1999 LR, 2002 ACL/PLC recon, reversal of LR, 2004 ACL revision, 2006 Car accident torn PCL and small fractures resulting in bone chips in my knee.  Torn MCL 3 times.  Wicked screws under IT band and Pes Anserine.  June 2008-Hip Arthroscopy.

Offline Aaron_Wolfe

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Re: Online Non-Profit Arthritis Study Seeks Volunt
« Reply #2 on: September 30, 2004, 07:50:20 PM »
Thanks, ATsoccergirl. Some have asked whether this is open to people living outside of the US. We are based in the US, but we welcome participants from around the world. Our questionnaires are available in International English, and also French and Spanish.


Offline AndrewC

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Re: Online Non-Profit Arthritis Study Seeks Volunt
« Reply #3 on: September 30, 2004, 10:40:11 PM »
Definately a good idea. Back at the top for a bit!
Big bucket handle tear to lateral meniscus from sporting injury. Arthroscopy and meniscal repair carried out June 2004. sloooowwww recovery!!

2018 - torn medial meniscus in RH knee, partial extrusion. ongoing issues,

Offline Aaron_Wolfe

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Re: Online Non-Profit Arthritis Study Seeks Volunt
« Reply #4 on: October 07, 2004, 06:37:38 PM »
Now is an especially good time to join the study so that you can take the January questionnaire. Please let me know if you have any questions.

Thanks,
Aaron















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