Research Opportunities and Updates
Considering participation in a clinical trial?
Read the following to guide your decision:
Experimental treatments for SCI: what you should know. (pdf 1.7MB)
Help us learn about living with a spinal cord injury
Are you at least 18 years-old and have you lived with a spinal cord injury for at least 5 years? If so, we would like to invite you to participate in a study being conducted at the University of California, Irvine. The purpose of the study is to examine physical and affective well-being among people with a spinal cord injury. If you choose to participate, you will be asked to complete a series of over-the-phone interviews. You will be compensated $150.00 for completion of the study. If you are interested in participating or have any questions, please call the emotion research laboratory at: (949) 824-3991 or email us at emotion@uci.edu.
The SBRR Seeks Participants to Help Prevent Spina Bifida
The Spina Bifida Research Resource (SBRR) is a study funded by the National Institutes of Health to investigate the genetic and environmental causes of spina bifida and anencephaly. Although we know that taking folic acid before and during the first trimester of pregnancy reduces the risk of having a baby with a neural tube defect by up to 70%, we do not know the exactly how folate prevents neural tube defects or the factors which cause these serious birth defects. The goal of our research is to identify the causes of spina bifida and anencephaly by studying both the genetic and environmental factors that may increase one’s risk.
In order to achieve our goal, it will be necessary to obtain information from a large number of individuals with spina bifida and their families. We have been recruiting such families since 1997 and recruitment is ongoing. Currently, there are over 600 families participating and our goal is to include at least 1,000 families. We presently recruit through a number of spina bifida clinics and local Spina Bifida Association chapters across the country.
Briefly, the families who participate in this study are asked to: (1) provide a saliva or blood sample from the affected individual and his/her parents; (2) complete an interview, conducted in either English or Spanish, covering pregnancy, medical, and family history; and (3) provide permission to contact some additional relatives. All parts of the study can be done by phone or mail, so no extra clinic visits or travel is required of the families and there are no costs associated with participation in this study.
Information is available in English and Spanish. If you would like more information about the study, the website address is www.sbrr.info. If you would like to participate in the study or have questions, please contact Barbara Weyland, toll free, at (866) 521-7289, or by e-mail at bweyland@ibt.tamhsc.edu.
Personality Characteristics Survey
Dr. Susan Miller of Florida State University is conducting a survey about a variety of different personality characteristics (such as optimism and sense of humor) and quality of life in persons with spinal cord injury. You are invited to participate in this survey if you:
