[Nfbnet-members-list] Precision Medicine Research Request

[dandrews920 at comcast.net]

We have been asked to circulate this again – as they are still looking for participants.

 

Dave

 

Invitation Email

DATE

SUBJECT:   Invitation to participate in an online survey study at Columbia University – Dr. Maya Sabatello

 

We invite you to participate in an online survey at Columbia University that explores views on inclusion of people with disabilities in a type of health research called “Precision Medicine Research.” Precision Medicine Research looks at a person’s genetics, environment, and lifestyle. Knowledge from this type of research can help physicians improve prevention and diagnosis of diseases and develop new treatments. 

Our study is funded by the National Institutes of Health.

You are invited to participate in this study because you live in the United States and are:

*	A deaf adult
*	A hard of hearing adult
*	A blind or low vision adult
*	An adult with a mobility disability

Your views are valuable to us. 

If you agree, we will ask you questions about your views on health research, especially Precision Medicine Research. You will also be asked to provide some background information about you (e.g., your race, ethnicity, etc.). You do NOT need to have prior knowledge about Precision Medicine Research to participate in this study. 

It will take up to about 45 minutes to complete the survey. 

The survey will be conducted online (see link below). You can complete the survey on a tablet, computer or smartphone. You can ask another person to help you to complete the study. We can also schedule a one-on-one Zoom meeting to support survey completion. If you need any disability accommodations, please let us know. 

Please note, the survey is currently in English. It will soon be available also in Spanish and ASL. If you prefer to complete the survey in Spanish or ASL, let us know by clicking on the link below. We will let you know when these languages are available.

If we have questions about your survey responses, we will reach out to you to discuss.

Only the research team will have access to your responses. In the future, we may share data from this study with other researchers. We will NOT share your identifying information with anyone outside of the research team.

The study will help us understand how Precision Medicine Researchers and research institutions can create health research studies that include, and are respectful of, people with disabilities. 

You are offered a $30 gift card for completing our online study.

 

 <https://survey.alchemer.com/s3/8102215/Links-to-3-Versions-of-the-Trust-Study-National-Survey> Click here to participate in our study

 

 

If you have any questions, please contact the lead researcher, Dr. Maya Sabatello, at  <mailto:trust-study at cumc.columbia.edu> trust-study at cumc.columbia.edu. 

 

Thank you in advance for your help.

Sincerely,

Maya Sabatello, LLB, PhD

Associate Professor of Medical Sciences 

Co-Director, Precision Medicine: Ethics, Politics, and Culture Project

Department of Medicine and Department of Medical Humanities & Ethics

Columbia University 

 

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