EURORDIS en breve

El Instituto Nacional de Investigación del Genoma Humano de los Institutos Nacionales de la Salud (NIH) está financiando un estudio que tiene por objeto conocer qué piensan y sienten los padres con hijos que padecen una enfermedad sin diagnosticar respecto dicha enfermedad. Son posibles candidatos tanto hombres como mujeres mayores de edad con al menos un hijo que lleve más de dos años con una enfermedad sin diagnosticar.
Para más información, por favor visita:
http://www.surveymonkey.com/StudyNoticeUncertainty

Anne C. Madeo, MS, CGC
Principal Investigator
National Human Genome Research Institute
National Institutes of Health
301-443-2635 (voice)
anne.madeo@nih.gov

www.surveymonkey.com/SurveyExperienceUncertainty


Study Notice--The Experience of Uncertainty StudyExit this survey
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Research Study: You are invited to participate in a research study sponsored by the National Human Genome Research Institute, one of the National Institutes of Health.

Why is this study being done? To learn more about how parents of children with an undiagnosed medical condition think and feel about their child’s condition.

Who can be in this study? You can be in this study if you have a living child or children with a medical condition that has been ongoing for longer than two years and for which you have not received a conclusive diagnosis.

What is involved in this study? One survey that takes about 45 minutes to finish. The survey asks for your thoughts and feelings about having a child or children with an undiagnosed medical condition. The survey also asks questions about your everyday life.

What are the risks of the study? There are no physical risks of taking part in this study. Some of the topics covered in the survey are sensitive or personal. There is a risk that taking the survey may cause you to become concerned or upset. If this happens, please contact Anne Madeo (her contact information is listed below) so that she may help you. If you are very worried about the chance that you may become upset, you do not have to take this survey.

Are there benefits to taking part in the study? No, there are no personal benefits to you from taking part in this study. However, your answers would tell us more about the experiences of parents who have a child or children with an undiagnosed medical condition. We hope this that this knowledge will improve health care and counseling for these parents.

Will I be paid? No, you will not be paid for participating in this study.

Do I have to take part? No, you do not have to be part of this study if you do not want to. You can stop taking the survey at any time, or skip any question(s), without penalty.

Who else will know that I am in the study? No one else will know that you are in the study. The study is completely anonymous. We do not ask for your name on this survey. No researcher will ever have access to your name. This study will not be part of any medical record or medical visit. When we report our research results, it will be done anonymously so that you will not be identified.

How do I take part? The survey can be done online or through the mail. If you would like to fill out the survey online, please go to:

www.surveymonkey.com/SurveyExperienceUncertainty

The password to enter the survey is:

Uncertainty

If you would like to fill out the survey on paper rather than online, contact Anne Madeo at the contact information listed below. She will mail you a copy of the survey along with a stamped return envelope. Any contact information you give the researchers so they can send you a survey will be destroyed after it is mailed to you and will not be linked to your responses.

How can I learn about the results of this study? After the study is completed, we plan to post a short summary of our results on the support network websites or listservs where you learned of this study. Please check the website in the future for this information.

Problems or Questions? If you have any problems or questions about this study or about your rights as a participant, please contact Anne Madeo. If you have any concerns about your child’s condition or about issues brought up by this survey, please contact Anne Madeo.

Thank you for your time and interest!
Anne C. Madeo, MS, CGC
Principal Investigator
National Human Genome Research Institute
National Institutes of Health
301-443-2635 (voice)
anne.madeo@nih.gov