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. They 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 or to participate in this study about this study, please review the Notice to Participants http://www.surveymonkey.com/StudyNoticeUncertainty 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
Email: anne.madeo@nih.gov
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NIH survey of Parents of Undiagnosed Children
- By MLDdad
- Posted October 29, 2009 at 1:49 pm · 0 replies
- In Undiagnosed - White matter disorders of unknown origin (UND)
- Shared with the public
- Edited October 29, 2009 at 1:51 pm
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