A growing number of studies involving volunteer research participants, called Clinical Trials are now underway examining the complex health and medical issues that surround Spina Bifida.
Keep watching this page for new research studies. From time to time, these studies will ask for your participation. We urge you to consider becoming a part of this important work.
Review our Participating in Research information to learn the basics of research before you decide to participate.
Research Now in Progress
- The Genetics of Neural Tube Defects
Researchers at the University of Miami Hussman Institute for Human Genomics (HIHG) are interested in learning more about the causes of both open neural tube defects (NTD), like spina bifida (meningocele or myelomeningocele), anencephaly, and encephalocele, and closed NTDs, like lipomeningocele, lipomyelomeningocele, and tethered cord. Our research goal is to better understand the genetic and environmental causes of NTDs, which will hopefully lead to more accurate genetic counseling and risk assessment, better prevention methods, and improved treatments/ interventions to improve NTD outcomes.
If you, a family member, or friend has been diagnosed with an NTD such as Spina Bifida, we invite you to join our research study. Participation is free. Travel is not required. Participation involves signing a consent form, providing a DNA sample, a family and medical history interview, and permission to review your medical records to confirm NTD diagnosis. We maintain the highest standards of confidentiality for all families. If interested, please contact Maria Ciliberti, the NTD study coordinator at 305-243-4360 (Mciliberti@med.miami.edu) or toll-free at 1-877-686-6444. Please visit our Web site at www.hihg.org for more information.
- Hereditary Basis of Neural Tube Defects
The Duke Center for Human Genetics is currently recruiting families in which one or more family members have any type of neural tube defect, including spina bifida. The goal of our study is to discover the genetic and environmental causes of spina bifida and other neural tube defects, which will hopefully lead to better treatments of spina bifida or possibly preventions or even a cure. Our study is funded by a grant from the National Institutes of Health and has been enrolling families since 1993. Participation in the research is free and does not require travel to Duke University Medical Center. Study participation includes a telephone interview, permission for the research team to review the medical records of the family member(s) with an NTD to confirm the type and level of the lesion, and obtaining blood samples from the person with an NTD and his or her parents and siblings, if possible.
If your family is interested in learning more about this NTD research or in participating, please contact us toll free at (866) 385-3683, e-mail us at firstname.lastname@example.org or visit us on the web at http://www.chg.duke.edu/diseases/ntd.html.
- National Disease Research Interchange
The Spina Bifida Association has entered into a new collaboration with NDRI (National Disease Research Interchange) to better understand, prevent, treat, and find a cure for Spina Bifida through research.
NDRI is a not-for-profit organization with 27 years of experience in procuring, storing, and distributing human cells, tissues, and organs to researchers and scientists. Tissues are procured through surgery, transplant, and autopsy from private, consented donors, hospitals, eye banks, and sources across the nation. NDRI receives core funding for the National Rare Disease Biospecimen Resource from the National Institutes of Health and support from the NIH Office of Rare Diseases.
If you are a researcher (DOC) interested in procuring de-identified biomaterials from a patient with Spina Bifida, or you are in need of normal, normal adjacent tissue, or other diseased tissue, a research application must be completed.
Patients (DOC) interested in donation should contact the Private Donor Program at NDRI to receive a packet of information describing the donation process, including consent and medical history forms.
- Spina Bifida Research Resource (SBRR)
The Spina Bifida Research Resource (SBRR) is a project, funded by the National Institutes of Health, to study the causes of Spina Bifida and anencephaly. To succeed, this project requires a partnership between scientists and families that are affected by these conditions. Families that join the SBRR are asked to complete an interview and to provide blood or saliva samples for genetic studies. No travel is required and there are no costs associated with joining the SBRR. Visit www.sbrr.info for more information.