FAQ

FORWARD—The National Data Bank for Rheumatic Diseases is a research data bank for the study of arthritis and rheumatic conditions. By rheumatic conditions, we mean rheumatoid arthritis (RA), osteoarthritis (OA), fibromyalgia, lupus, psoriatic arthritis, ankylosing spondylitis, polymyositis, low back pain, tendonitis, and many other problems- any condition treated by a rheumatologist or joint specialist. The FORWARD project collects data on rheumatic conditions directly from persons who have these problems. The goals of the project are to advance knowledge about the causes, outcomes, costs, treatments, and results of treatments related to rheumatic conditions. Another important goal of the FORWARD project is to stimulate research and study by health professionals by making FORWARD data available for medical research.

People volunteer to participate in research for a variety of reasons. The primary reason people give for FORWARD 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. FORWARD research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.

Complete the enrollment questionnaire on the Join FORWARD! page. We will contact you by email, mail or phone, After you enroll, you will receive a research questionnaire every six months and a FORWARD newsletter every 3 months.

There are over 10,000 participants in FORWARD. Each one is important because everyone’s experience is unique. Since we have so many participants in the FORWARD research project, our research is able to answer questions about treatment effectiveness and side effects that could not otherwise be obtained ordinary medical studies.

Yes. More than 1,000 rheumatologists from across the U.S. have helped in this arthritis research project.

Because this is a research project, we are unable to answer individual questions about treatment and symptoms.  You may also find that our website is a valuable source of information.

We’re glad that your rheumatic disease isn’t active at the moment! Ironically, it’s when you’re feeling good that we really need you in the study so we can figure out what worked for you and whether it might apply to others, and compare any secondary conditions you might have with those of people who are not as healthy as you. If we only studied people who were feeling bad, it would be impossible to know what treatments work. Conversely, people who come out of remission also provide a lot of valuable information. Of course, we hope your remission is very lengthy.

Those of you who return your questionnaire within two weeks of receiving it are eligible for a special reward.  We give away $1,000 prizes to several participants who return their questionnaires promptly as a token of our gratitude for helping with this research.  Those of you who return the questionnaire at any time during the 6-months, are eligible for smaller prizes of $500.  The participants who receive a $1,000 or $500 prize are chosen at random in a special drawing and, with permission, their names are announced in our newsletter.

We send a FORWARDNewsletter to each participant. This newsletter contains information about arthritis, new treatments, research in general, and the results of research that you have participated in by completing the questionnaires. There is the altruistic compensation of knowing that you have helped to improve arthritis treatment and outcome, as well as increasing the medical community’s knowledge of your condition by participating in this research project.

We hope you won’t do this because this research depends on a continuing group of people helping together over time. But, of course, you may discontinue participation at any time and for any reason.

The project director is Dr. Frederick Wolfe. Dr. Wolfe is a rheumatologist, winner of the American College of Rheumatology Distinguished Rheumatologist award, and has been designated as a Master of the American College of Rheumatology. He has a long list of research publications. For information about the director click here or go to the CV page.

We ask many different kinds of questions. Here are some of the areas in which we ask questions.

• Pain
• Functional ability
• Work ability
• Disability
• Joints that are affected
• Symptoms
• Treatments with medications and surgery
• Side effects of treatments
• Other illnesses
• Questions about who you are
• Questions about how you manage with your illness

We send a FORWARDNewsletter to each participant. This newsletter contains information about arthritis, new treatments, research in general, and the results of research that you have participated in by completing the questionnaires. There is the altruistic compensation of knowing that you have helped to improve arthritis treatment and outcome, as well as increasing the medical community’s knowledge of your condition by participating in this research project.

Generally, we mail questionnaires to participants every 6 months. When you first join, we will send you an additional special questionnaire to obtain some background information about you.

We’re glad that your rheumatic disease isn’t active at the moment! Ironically, it’s when you’re feeling good that we really need you in the study so we can figure out what worked for you and whether it might apply to others, and compare any secondary conditions you might have with those of people who are not as healthy as you. If we only studied people who were feeling bad, it would be impossible to know what treatments work. Conversely, people who come out of remission also provide a lot of valuable information. Of course, we hope your remission is very lengthy.

Knowing how to mark pain severity or function can be difficult. If the question asks for a specific time period, such as the last 4 weeks, you should try to focus on that. If it asks about the last 6 months, it may be harder to remember, but you’re looking for an average of how you were over that period. It’s also perfectly normal to have high function at one point in the day and then worse function later or the next day. In the end, these kinds of questions are about your impressions about yourself, so there is no right or wrong answer. You just have to go with what you feel is right.

As for questions that may not apply to you, if you contact us with a specific example, we may be of more help. Otherwise, just know that we try to make sure the questions make sense for everyone and that all appropriate answers are listed. If not, you simply have to make the best choice, even though it may not be completely correct for you.

Many of the questions are subjective. We want you to answer them from your perspective. For example, we’re interested in whether something is heavy to you, not to Arnold Schwarzenegger. Likewise, unless the question says otherwise, we’re interested in your current abilities, not those when you were younger or perhaps healthier. So normal is based on what you think is normal.

The information you provide will be entered into a computer data bank for use by medical researchers. Your name and any identifying information is removed from any data used for research. Researchers describe their findings in articles that are published in medical journals and in presentations at national and international meetings. That way, all doctors who treat arthritis are able to receive the benefit from the research. What they learn will help them to provide better medical care to people with arthritis and similar medical conditions.

We understand that it may not always be possible for everyone to remember something that happened or started a long time ago. If you can’t remember the answer to a question or how you felt in the past, the best we can hope for is that you’ll give us your best guess.

Some questions ask about your rheumatic disorder, and others ask about your general health, which includes everything else, such as any other medical problems you may have. If it’s not clear, you should answer with your general health in mind. In any case, don’t worry about the difference too much or spend too much time on it. Your first thoughts on it are probably the most valuable to us.

In fact, many of the people in the study have more than one health problem. We are able to separate out the symptoms by using many of the answers you give us. There are many, many diseases and conditions that people in the study have in addition to their rheumatic diseases. It would beyond our capacity to study all or many of them, and the length of the questionnaire would probably cause many people to drop out, which would hurt the basic purpose of our research.

Only the research staff. They look at the questionnaire to see if it is complete and to make sure that your name and address are correct for mailing. Once your information is in our research data bank your name is removed for research purposes. That is, any researcher using the data bank for medical research cannot identify you.

We usually are unable to retrieve past questionnaires for you. If you want to keep track of your answers for your own records, the best thing to do would be to print the pages as you go.

We also provide a personal report that has the main items that can help your rheumatologist/physician and you in seeing how your disease or arthritis is affecting you.  To obtain the personal report, you will need to set up an account on our website: https://www.arthritis-research.org/user/register

If you have problems setting up the account and would like a copy of your personal report, please click here to contact us.

No. We do not give away names or sell them, or make them available to anyone else. We have 25 years experience collecting arthritis data and protecting the confidentiality of research participants.

It is usually possible to adjust the type size on your computer screen. This is usually found in the VIEW menu of your browser. You can also adjust the screen resolution from the control panel. You can find out how to do that using the help information on your computer.

At the top of each WebQuest page you see the word Print. Click there, and your print dialogue box will open up. You must have a printer attached to your computer to print. An alternative is to use the copy and paste functions of your web browser to save the answers to a file on your computer.

Copy the entire link and paste it into the address bar of your web browser. You can also just type it it, but copying it will be much easier

If you are still not able to get to the questionnaire, please Contact Us and let us know what you tried and which if any error messages you may have seen on your computer.

On some computers set up for larger text, the questions will sometimes drop down on the page below the navigation bar. This is what has happened if you see a bluish/gray screen with the navigation bar on the left. In order to see the questions, all you need to do is scroll down using the scroll bar on the right hand of the browser. Or, you can press the Page Down button on your keyboard a few times until you see the questions. Please contact us if this does not work.

The patkey is a unique identifier we use in our database to organize your information and to keep your personal information secure.  This is what is used instead of your personal information when we are reviewing the data for research.

We’re sorry that you are having problems opening your questionnaire. Can you tell us if you are seeing any error messages, and what exactly happens when try to open it? Please try again and let us know what you see. If you can copy and paste the error messages and send them to us that will help solve the problem.

We do our best to make WebQuest compatible with Apple Macintosh computers. You are probably having a problem caused by the web browser you use. If you are using Microsoft’s Internet Explorer for the Mac, please be aware that this browser will not work with WebQuest. Please do not try to use it, it will not save your answers. That browser is obsolete, as Microsoft stopped upgrading it several years ago.

If you have another browser installed on your computer, give it a try. WebQuest is tested to work on Safari and Firefox.

Safari:

http://www.apple.com/safari/download/

Firefox:

http://www.mozilla.com/firefox/

Or, contact us if you would prefer a paper copy of the questionnaire sent to you in the mail.