Clinical Trials, Why and How to Get Involved


Posted 1.20.11 | Mallory West

Many of you have little ones who suffered for weeks, months or even years before finally getting a diagnosis. The diagnosis may have been a food allergy, gastroesophageal reflux disease (GERD), an eosinophilic disorder, food protein-induced enterocolitis syndrome (FPIES), multiple food protein intolerance (MFPI), or a similar allergy-related condition. The diagnosis explains your child’s symptoms and helps you manage them. Although you were likely relieved to have an answer and appropriate treatment plan, many of you were probably still left with many questions.

Research has given us many answers in recent years but there are many questions that still remain. Why did my child develop this condition? Is there any way to prevent this condition? What are the chances that siblings will develop the same condition? Is there a way to actually cure the underlying condition so that my child can eat a normal diet? The best way to get these answers is to support clinical research. There may be a research study on your child’s specific condition at a facility near you. Enrolling your children is the best way to get closer to the cause of these diseases and hopefully someday, the cure.

Finding a Clinical Trial

It’s easy to find trials on the U.S. National Institutes of Health (NIH) website: http://www.clinicaltrials.gov. Here are some clinical trials (which are seeking participants) that may apply to your child’s condition:

Obviously, pediatric allergic diseases are getting more and more attention from researchers. By joining a clinical study, you can help strengthen the research and do your part to help find answers. You can refine your search for a clinical trial by location so that you can find a clinical trial near you. You can even see a list of studies on a map.

Questions You Should Ask Before Enrolling in a Clinical Trial

Before you enroll your child in a clinical study, it’s important to understand exactly what a clinical trial is. Here are the answers to some questions that you might have. Chances are that you may be a little wary about signing your child up to be a “guinea pig” for science. And that’s okay; it’s your job as a parent to be careful!

You should make sure that you get all the facts before you decide to participate. The National Institutes of Health actually has a website dedicated to clinical studies for children that provides information and guidance for parents. For example, they provide a printable document (http://www.nhlbi.nih.gov/childrenandclinicalstudies/downloads/english/pdf/questions_to_ask.pdf) with questions that parents may want to ask when considering enrolling their child in a clinical study. Once you get all the information, your family can decide if participating in a clinical trial is right for you.

Have any of you participated in a clinical trial in the past? What has your experience been? Would you do it again?

- Mallory

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Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.