Position Statement on Unproven Therapies

The Spina Bifida Association (SBA) is committed to the highest standards of care for patients and families affected by Spina Bifida (SB). Because SB is a complex illness with many different challenges, a wide variety of therapies and treatments are needed. Despite remarkable progress, there remain significant border zone areas where established treatments are not completely effective.  These border zones represent promising areas for research, but also a potential zone of vulnerability for patients and families.  

Unproven therapies are sometimes offered and promoted vigorously on social media or by word of mouth and can be very appealing. Claims of effectiveness and safety where conventional therapies fall short can be very appealing for patients and families who are hurting, frightened and frustrated and looking for the best care for their loved ones. Regrettably, most of these therapies have not been subjected to usual rigorous standards of evidence-based medicine including peer review and oversight by an institutional review board (IRB). 

While these high standards and reviews can slow the progress of research, they are essential in assuring safety, appropriate study design and ethical, accurate presentation of outcomes. In practical terms, these safety measures protect patients from false reports or poor study design that result in potentially dangerous, ineffective, non-reproducible results. 

As such, the SBA strongly encourages patients and families considering unproven therapies to ask detailed questions, consult with physicians from your care team and consider second opinions for any treatment involving significant cost or risk. Reliable sources for such consults include providers associated with SBA Clinical Care Partners or academic medical centers (usually but not always associated with universities). The SBA can help facilitate contact with these teams and institutions if questions or concerns exist. 

 

Approved by SBA’s Professional Advisory Council
May 2023

 

This information does not constitute medical advice for any individual.  As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.