NIH Study, survey of kids without diagnosis

This is a place where parents can interact and gain support for medical, emotional and ongoing issues with School.

Moderators: Mike Bartolatz, kwork

Post Reply
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

NIH Study, survey of kids without diagnosis

Post by Mike Bartolatz »

Dear uveitisguy,

We're writing to let you know about a study being conducted by NIH for parents of children with undiagnosed medical conditions. To learn more about the study and participate, please click the link below. And please feel free to pass this information along to friends and family who you think may be interested.


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


Thank you for your time, and for being part of Inspire.

Team Inspire

Your Inspire message preferences · Send
Mike Bartolatz
Post Reply