This is a research survey for people with rare disorders. It is designed to measure barriers and improvements to diagnosis and treatment. It is part of a research project by medical students at Michigan State University, College of Human Medicine.
In 1989, NORD’s conducted a similar survey which defined the obstacles facing people with rare disorders. The results of that survey were documented in a report to Congress. We will issue a report in the Orphan Disease Update newsletter summarizing the result of this current survey when it has been completed. The results may also assist in demonstrating the needs of the rare disorder community to various governmental, research and healthcare entities.
We would greatly appreciate if you would take a few minutes to answer the following questionnaire about your health care services. Answering requires selecting answer choices with your mouse and typing short (50 character or less) answers to questions. Your participation is voluntary. You can skip questions. You can quit the survey at any time. The answers from all surveys will be put together. This questionnaire contains no identifying information, so your answers will be strictly anonymous.
We appreciate you taking the time to participate in this important research survey and we look forward to receiving your completed questionnaire.
If you need further information, the investigators can be contacted at:
Department of Family Medicine
Tower B B104B Clinical Center
Michigan State University
East Lansing, Michigan 48824-1313