Dear Research Participant:

You are being invited to participate in a research study titled “Understanding the Relationship Between Self-Efficacy, Locus of Control, and Self-Management Behaviors in Adult Patients and Parents of Child Patients with Ehlers-Danlos Syndrome (EDS).” The primary investigator for this study is Sabrina M. Neeley, PhD, MPH, an Assistant Professor in the Department of Community Health, Boonshoft School of Medicine, at Wright State University.

The purpose of this study is to understand some of the factors that influence how EDS patients, and parents of children with EDS, manage the condition. Your opinions are very important to us, and the results will be used to advance our understanding of how best to provide information that will help EDS patients learn self-management skills.

The survey should take approximately 15 minutes to complete. You may complete the survey at your leisure. Participation in this study is completely voluntary; you may choose to participate or not. You may only answer the questions you feel comfortable answering, and you may stop at any time without penalty. Your responses on the survey will remain completely confidential and no personally-identifying information will be collected.

You must be 18 years of age or older to participate. There are no risks or direct benefits to you in participating in this survey.

Completion and submission of the survey indicates your willingness to participate in the study. If you would like a copy of the summary results of this research when the study is completed, please contact Sabrina Neeley at the address below, after October 1, 2010.

You have a right to ask questions about this research. If you have any questions or concerns about this research project, please contact Sabrina Neeley at the address below. General questions about your rights as a research participant in this study can be addressed by contacting the Wright State University Institutional Review Board at(937) 775-4462.

Thank you for your time and consideration. Your voluntary participation in this study is greatly appreciated.


Sabrina M. Neeley, PhD,MPH
Assistant Professor, Wright State University
Boonshoft School of Medicine, Center for Global Health
3123 Research Blvd., Ste 200
Kettering, OH 45420-4006
Phone: (937) 258-5540/Fax (937) 258-5544