Research Study on Undiagnosed Conditions

Please pass this information on to anyone you know who might meet the criteria for this international study into undiagnosed conditions. The study has undergone IRB (ethics committee) review and approval and is listed at

The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition

The National Human Genome Research Institute at the National Institutes of Health in the United States 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 [no longer available].

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

NZORD encourages wide distribution of this information to eligible people.