According to the Spina Bifida Association, spina bifida is the most common permanently disabling birth defect in the U.S., occurring in 7 out of every 10,000 live births. The SBA estimates that more than 166,000 U.S. citizens currently are living with spina bifida, although the numbers may be much higher.

Spina Bifida and Clinical Trials
Because spina bifida is essentially a birth condition that manifests itself differently for each individual born with this condition, the range of disabilities and associated health problems– physical, emotional, and cognitive – are equally diverse. So, too, are the clinical trials going on for spina bifida.

For example, a recent search of the U.S. National Institutes of Health site ClinicalTrials.gov showed 18 studies for which participants were being recruited, including “Psychosocial Adjustment of Adolescents with Spina Bifida,” “Genetics of Spina Bifida and Anencephaly,” and “Prevention of Post-Operative Bone Loss in Children.” Other clinical trials deal with related issues, such as mobility and exercise, or assistive technologies for people with limb impairment.

The purpose of these clinical trials (essentially research studies) is to test an “intervention” of some sort by following a pre-defined series of steps or processes so that results can be compared, validated, and reproduced by other researchers. In the case of spina bifida clinical trials, the studies generally focus on management of the symptoms, (such as innovative ways to treat urinary tract infections with probiotics), or prevention of the condition (e.g., prenatal repair surgery).

Locating Clinical Trials for Spina Bifida
The best place to check for clinical trials related to spina bifida is, as noted above, the NIH’s site, ClinicalTrials.gov. This authoritative clearinghouse or “registry” of all federally and privately supported clinical trials going on in the U.S. and around the world lists more than 80,000 trials located in 170 countries.

There are two ways to search for spina bifida-related clinical trials on the site. First, you can simply type “spina bifida” in the search box in the upper right-hand corner of every page. This will bring up studies that either are specifically targeted to spina bifida or focus on conditions that may be the result of spina bifida or other conditions (for example, mobility impairments). So this is the “widest coverage” approach.

Second, for more narrowly targeted results, click on “List Studies by Condition” in the right-hand list on the home page, then “alphabetical listing of conditions” at the top of the “Select a Condition Category” page, then select the “S” condition letter, then Spina Bifida. (Or to shorten those directions, List Studies by Condition > “alphabetical listing of conditions” on Select a Condition Category page) > S > Spina Bifida.) This approach will bring up all studies that specifically target some aspect of Spina Bifida.

Whichever way you choose to search, the results will include, for each trial, the clinical research purpose or goals, who is eligible to participate, locations where the trial is being held, and contact information. There will also be an indication of the trial’s status, e.g., recruiting, terminated, active – not recruiting, completed, not yet recruiting, etc.

Alternatively, if you’ve heard about some new treatment or medication you’d like to search on, you can also see a list of studies by drug intervention, sponsor, and location noted under “Study Topics” on the home page.

Should You Consider Participating in a Spina Bifida Clinical Trial?
The question of whether or not to participate in a clinical trial for yourself – or your child – is an important one to discuss with your doctor or pediatrician. It may have physical and well as emotional ramifications that you need to understand, be prepared for, and know you can live with. On the other hand, by participating, you may improve your own circumstances, or help develop knowledge that will improve the lives of others.

The best way to start thinking about whether a clinical trial might be right for you is to learn more about what clinical trials are, and what to expect, by reading the extensive overview of clinical trials provided in the ClinicalTrials.gov’s “Understanding Clinical Trials” section.