Dear Member,
We would encourage everyone to take this short survey about “The impact of illness and attitudes towards genetic testing for inflammatory bowel disease (IBD) in the Ashkenazi Jewish population”. Both individuals with IBD and their unaffected family members are encouraged to participate.
http://j.mp/1iMbTXy
The survey looks to assess the following:
- How living with IBD impacts a patient and their family members.
- How individuals receive their information about IBD and whether they are satisfied with the quality of education about IBD they receive.
- Attitudes towards genetic testing for IBD genes associated with developing IBD, treatment outcomes and testing of unaffected family members.
The purpose of this research study is to see how living with IBD impacts a patient and their family members, how individuals receive their information about IBD (At the Where do you currently receive information about IBD? you can check by Other and write in JCCSG… Thanks…) and whether they are satisfied with the quality of education on the disease they receive. Finally, the study looks to access attitudes towards genetic testing for IBD genes associated with developing IBD, treatment outcomes and testing in unaffected family members. You are being asked to take part in a research study because you are 18 years or older, of Ashkenazi Jewish descent and either yourself or your family members have a diagnosis of IBD.
You will be asked to complete an anonymous survey. Your participation in this study will take about 5 minutes. We expect that 100 people will take part in this research study.
You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time.
The possible risks to you in taking part in this research are:
- Feeling uncomfortable answering questions about yourself or your family members…
The possible benefits to you for taking part in this research are:
- Help researchers and clinicians working with IBD patients to understand the impact of living with or having a family member with IBD, as well as guiding what information may help those diagnosed with IBD. Additionally, helping to determine the communities desire for genetic testing in the future.
To protect your identity as a research subject, no identifiable information will be collected.
If you have any questions about this research, please contact the Researcher, Emily Boniferro, MSGC Candidate, at
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