The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child’s condition. We hope that this knowledge will improve the health care and counseling for these parents. Men and women who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are needed to take part in this study. Participation involves one survey that takes about 45 minutes to finish. The survey can be taken online or a paper copy can be mailed to you. For additional information about this study, you may review the Notice to Participants disclosure.
If you have questions, please contact:
Anne C. Madeo, MS, Principal Investigator
Genetic Counselor
National Human Research Institute
National Institutes of Health
Bldg. 31, Room B1B36
31 Center Drive, MSC 2073
Bethesda, MD 20892-2073
Phone: 301-443-2635