Getting started on MS research

You've got questions about MS, and you want answers. You're interested in doing your own research, but where do you start?

Asking a clear question

First, narrow down what you want to know. There may be a hundred questions going through your mind, but start with the thing that you want to know most. Try to think of it in terms of a question that you want answered. Make this question as clear and specific as possible (for example, if you're interested in learning about MS treatments, focus on the type of MS that you have).

Here are some examples of clear, specific questions:

  • What causes MS?
  • How are MS relapses treated?
  • Are there any new treatments for relapsing-remitting MS?

Knowing where to look

Once you've got a clear question in mind, you need to know where to look for information.

There are many information sources, including:

  • your doctor, nurse, or pharmacist
  • your local MS society
  • a library
  • the internet

Which source is best? That depends on your question and the way that you like to learn.

Your doctor, nurse, or pharmacist can help answer questions related to your care, and can also help direct you to other MS information sources.

Your local MS society can be a great starting point for information, as they will often have information prepared to answer some of the commonly asked questions about MS and MS research, and can direct you to other information sources. See www.mssociety.ca for more information.

Your local library can also be a good place to start. The librarian can help you find information and teach you to do your own searches of resources available through the library, which may include books, newspapers, magazines, and scientific journals.

You can also search for information using the internet. This gives you access to a wide variety of information, including scientific journals, videos, articles, and online support groups. But to get the most out of the internet, you'll need to learn to search effectively and separate good information from bad (for tips, see "Being a savvy internet searcher").

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-Doing-Your-Own-Research

Being a savvy internet searcher

If you're looking for information on MS, the internet is a powerful tool. Here's how to locate the information you need and make sure it's from a trusted source.

Finding information

There are a few different ways to quickly find the information you need:

MS-related websites: The MS channel on this website has a wealth of information, including a large number of articles on living with MS. MS-related websites such as the MS Society of Canada (www.mssociety.ca) and the National MS Society (www.nationalmssociety.org) sites bring together useful, good-quality information on MS.

Search engines: Search engines help you quickly find websites related to your keywords (words that relate to your question). To find information, visit a search engine (e.g., search.yahoo.com, www.google.ca) and type in words related to your question. For example, if you want to know whether there are any new treatments for relapsing-remitting MS, you could type in new treatments relapsing-remitting multiple sclerosis.

Databases: If you're looking for articles from scientific journals such as the New England Journal of Medicine, Nature, or the British Medical Journal, try using a database. Databases bring together huge collections of scientific journal articles and let you search through the collection using keywords. The PubMed database, available at www.ncbi.nlm.nih.gov/PubMed/ is a popular choice. Google Scholar (scholar.google.com) is another way to search through scientific journals, books, and articles.

Evaluating a website

How do you know if you can trust a website? Here are a few questions to keep in mind:

  • Who sponsors the website?
  • When was the information last updated?
  • Does the site clearly distinguish advertising from the rest of the information on the site?
  • Are funding sources identified?
  • Does the site collect personal information? If so, does it have a privacy policy that explains exactly what will and will not be done with this information?
  • Is the information on the site intended to support, but not replace, your relationship with your doctor and other healthcare providers?
  • Is all of the information on the site created and reviewed by trained medical professionals?
  • Does the information seem to be balanced or is the site clearly promoting a product or opinion?

By asking yourself these questions, you can determine whether the website is a trustworthy source of health information. You can also ask your doctor, pharmacist, nurse, librarian, or local MS society to recommend trusted health websites.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-Doing-Your-Own-Research

How to read a clinical trial

Interested in learning about new MS research and treatments? You may find some of the answers you're looking for in a clinical trial report. A clinical trial is a study done in humans to answer a specific health-related question (e.g., to find out whether a new MS medication slows down the progression of the disease). Clinical trial reports, which are published in medical journals, can seem a bit intimidating. But once you know the basics, they can be a great source of information.

Here's how to read a clinical trial:

First, start with the title. This will give you a basic idea of whether the study can help answer your question. If not, then find another trial. If so, read on.

Next, check the abstract. An abstract, found at the beginning of the paper, is a quick summary of how the study was done and the results the researchers found. This will help you learn more about the study and what it found, and confirm that the information in the paper may be of interest to you. If not, then find another trial. If so, read on.

Now, take a look at how the trial was done. This will help you find out whether it was a good-quality study. Ask yourself the following questions:

  • Was the study done in humans? Ideally, you're looking for studies done in humans, because test tube (in vitro) and animal studies mean the research is still at an early stage.
  • Was the study treatment compared with a current, well-established treatment, or with a placebo ("sugar pill" with no medicinal ingredients)? The better studies will test the treatment against a placebo or another well-established treatment to see how it compares.
  • Were the study participants assigned randomly to a treatment group? If study personnel were allowed to choose which patients went into which groups, this could lead to bias.
  • Were the treatment groups similar to each other in all ways, and treated equally throughout the study, except for which study treatment they were receiving? This makes it more likely that any differences between groups are due to the treatment being studied and not to other factors.
  • How many people were in the study? Clinical studies will use the letter "n" to mean "number of people in the study." In general, the more people in the study, the better.
  • How long were the study participants followed? Longer follow-up helps us better understand the long-term benefits and side effects of treatment.
  • At the end of the study, were all study participants accounted for? Did a large number of them "drop out" of the study? If so, this may affect the results. The authors should explain how many people dropped out and what effect, if any, this may have on the results.
  • Were the study participants, their doctors, and other "study personnel" "blind" to treatment? In other words, did anyone know which treatment the study participants were getting? The best studies will use a "double-blind" design where neither the study participants nor the doctors and other study personnel know which treatment the participants are receiving (the patients and treatments are coded so that when the study is being analyzed after it has been done, it is known which treatment has produced which effect, but during the study the participants don't know). This helps get rid of bias due to expectations that people may have from a certain treatment.

You can find the answers to these questions in the study report. If you find that the study was well done (see the explanations above), then the next step is to look at the results and figure out how they apply to you. For tips, see "Putting information into perspective."

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-Doing-Your-Own-Research

How to read a clinical trial

The first thing you need to do when reading a trial is to decide whether the results are valid. In other words, can you trust the results? Here are a few questions to ask yourself to see if the study results are valid:

  • Was the study done in humans, in animals, or in a test tube or laboratory setting ("in vitro")? Test tube, laboratory, and animal studies mean that the research is still at an early stage. Studies in humans will give the best idea of how well the treatment will work for people with MS.
  • Was the new treatment compared with a current, well-established treatment, or with a placebo ("sugar pill" with no active ingredients)? The best studies will test the treatment against a placebo or another well-established treatment to see how it compares. Testing against a placebo allows us to see whether the benefits are due to the new treatment or to other factors. Testing against an established treatment gives information on whether the new treatment is better than, the same as, or worse than the established treatment.
  • Were the study participants assigned randomly to a treatment group? This "randomization" helps eliminate bias that may occur if study personnel were allowed to choose which patients went into which groups.
  • Were the treatment groups similar to each other in all ways except for which treatment they were receiving? During the study, were they treated equally except for the experimental treatment received? The more similar the groups and the more similarly they are treated during the study (for all factors except the treatment being studied), the more likely it will be that any differences seen between them are due to the treatment and not to other external factors.
  • How many people were in the study? The investigators of clinical trials use the letter "n" to mean "number of people in the study." In general, the more people (the greater the n), the better.
  • How long were the study participants monitored? If the participants were monitored for only a short time, there is less chance of understanding the long-term benefits and side effects of the new treatment.
  • At the end of the study, were all study participants accounted for? Did a large number of study volunteers "drop out" of the study? If so, this may affect the results. The authors should explain how many people dropped out and what effect, if any, this may have on the results.
  • Were the study participants, their doctors, and other "study personnel" "blind" to treatment? In other words, did anyone know which treatment the study participants were getting? The best studies will use a "double-blind" design where neither the study participants nor the doctors and other study personnel know which treatment the participants are receiving. This helps eliminate bias due to pre-determined expectations that people may have from a certain treatment.

If the study meets these criteria, your next step is to check what the study results were. When reading the study results, it's important to understand how the treatment effects were measured. This is called an "outcome measure." MS trials often use a disability rating scale (which rates a person's level of disability on a numbered scale) as an outcome measure. Look at the difference between the study treatment and the treatment it was compared to (a placebo or standard treatment). Did the treatment have better results than what it was compared to? The study should say whether this difference in results was "statistically significant." This means that the result is more likely to be due to a real effect caused by the treatment. A "p-value" is often used to measure statistical significance, and a p-value of less than 0.05 is usually considered to be statistically significant.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-Doing-Your-Own-Research

Putting information into perspective

Now that you've found some information on MS, it's time put it into perspective. Ask yourself:

Does this information apply to me?

Whether or not the information applies to you depends on a number of factors, including the type of MS you have, how old you are, other medical conditions you may have, and the medications you are taking. If the information came from the results of a research study such as a clinical trial, then it is more likely to apply to you if you are similar to the people enrolled in the study. To find out, look at the criteria that people had to meet in order to be part of the study, and ask yourself whether you would have met these criteria. If so, then it's more likely that the study results apply to you.

What difference could this information make in my life?

If you've read about a new treatment or a lifestyle change to help with MS, it's important to know how it could affect your life. Take a look at the information you've found, and consider:

  • How can this treatment or lifestyle change affect my MS?
  • Which of my symptoms could it help with, and how much of a change could I expect to see? Would this change be meaningful to me?
  • How long would it take for me to see a benefit, and how long would the benefits last?
  • What are the risks? Would I be willing to take the risks to get the benefits?

Your doctor can help you answer these questions. Talking to your doctor can be a great way to put the information you've gathered into perspective. Here are a few other questions to ask your doctor:

  • For clinical trials and other studies:
    • What do you think of this study?
    • Is it well designed?
    • Could the results apply to me?
  • For specific medications or lifestyle changes you're considering:
    • Are there any other studies about this medication/lifestyle change? If so, are the results similar or different?
    • What benefits could I gain?
    • What are the side effects and other risks?
    • Would you recommend this option for me? Why or why not?
  • For more information on MS treatment options:
    • What are my other treatment options at this time?
    • Are any new treatment options becoming available soon?
  • For general information on MS:
    • Where can I go to get good-quality information on MS and MS research?

By talking to your doctor regularly, you can keep up to date on the latest MS information and also hone your own skills at finding and evaluating information.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-Doing-Your-Own-Research