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EIGHT. Resources for People with Diabetes

I am interested in participating in research studies on new treatments for diabetes. How do I go about it?

How can I find and join a diabetes support group in my area?

How do I find out about the latest developments for treatment and monitoring of diabetes?

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Whom can I contact when I have questions about my diabetes?

First and foremost, you can contact your family physician, internist, and, if you have one, your endocrinologist or diabetologist. You can also contact your certified diabetes educator (CDE) nurse educator, dietitian, or pharmacist for questions in their respective fields. All American Association of Diabetes Educators (AADE) certified diabetes educators, regardless of their underlying professional credentials, should have at least some knowledge in all the major areas of diabetes management. You can contact your local American Diabetes Association (ADA) or Juvenile Diabetes Research Foundation (JDRF) chapter. Contact information for the regional chapters (state and/or city) can be obtained through the website of the respective parent organizations. For ADA, go to diabetes.org, choose Community Events and Local Programs, and then select What's Happening Locally and enter your zip code or city. For JDRF, go to jdrf.org and select JDRF in My Area and enter your state. Many regional chapters will have affiliated support- type groups for people with either type 1 or type 2 diabetes. It is not usually necessary to become a member in order to attend and participate in these. There are a number of diabetes-related magazines and newspapers, both paper and online, that are published by these organizations. It is usually necessary to become a lay member in order to receive a subscription to these. There are also online and paper magazines that are independent. This is a changing and dynamic environment and the best way to find out which are currently available is to enter the term diabetes magazine into your favorite Internet search engine. The ADA website (see previous mention) will provide you with a link to its publications, many of which are directed at people with diabetes, and include informative books on diet, nutrition, and medications, among others. Finally, your friends, colleagues, and relatives with diabetes can often be a great resource for local information and tips about managing your diabetes, although issues that fall into the realm of medical advice should only be provided by a licensed practitioner.

I am interested in participating in research studies on new treatments for diabetes. How do I go about it?

There are two main routes through which one can volunteer to participate in research studies involving diabetes. The first is to contact your local ADA or JDF affiliate, or their national website. Additionally, you can go to the clinicalresearch.gov and choose Where Can I Find Clinical Trials? where various links will direct you to a list of NIH-sponsored research projects in which you can participate. For clinical trials organized and sponsored by the pharmaceutical industry, you can go to clinicalconnection.com and select Find Clinical Trials, then enter diabetes as a keyword and enter your zip code.

Alternatively, you can contact your local medical center, teaching hospital, or university department of medicine, or your doctor, and ask for information on approved projects in the field of diabetes. Remember that clinical research studies must be approved by the local or central body that governs ethical conduct of such research, the Institutional Review Board or "IRB." Clinical research staff can only discuss projects that have already been approved by the IRB, with a view to recruiting you. Other studies, even though they may be planned or pending, can only be discussed in general terms and no steps, such as qualifying blood tests, can be made at this stage. If you provide the clinical research contact person with your contact information and written permission, he or she will contact you if a suitable project becomes approved and available for enrollment.

Clinical research investigators and their staff are always delighted to know of potential participants in clinical research and will certainly contact you if any appropriate study arises.

No matter how ready, willing, and able you are to participate, it may well be the case that a study that is specifically tailored to your type of diabetes or type of treatment may not be available. Do not be discouraged, nor feel that your volunteerism is not appreciated. Clinical research investigators and their staff are always delighted to know of potential participants in clinical research and will certainly contact you if any appropriate study arises. Also, be sure to mention your interest in research participation to your doctor as well anytime you are considering a specific project. He or she can discuss with you whether it is advisable for you to participate, given your individual health issues.

 
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