version1 (NOV2020)
The aim of this Survey is to collect information to create a database that may be used for future research. It has been requested by Dr. Stanley Hazen, M.D., in order for him to determine whether his research of our community is feasible. Everyone in the MEBO community and anyone who has been diagnosed with Trimethylaminuria (TMAU) or suffer from uncontrollable odor conditions yet to be diagnosed are welcome to submit their answers to this Survey.
Your personal identifying information will not be given to Dr. Hazen, but rather only your answers to the questions. If he determines that research will be conducted, not yet determined, and that you are qualified to be a participant of his research, you will be assigned a MEBO ID Number, if you do not already have one. It will be the only identifying information Dr. Hazen and his team will receive throughout the study. If additional information is required, your permission will be requested in advance.
In the event that another researcher with another research study is looking for participants, your answers in this survey will not be disclosed without your prior stated consent and permission.
Most questions can be skipped if not relevant or if preferred, but the more information provided, the better the researcher will be able to make a determination in his selection of participants for his research.
This survey is the work of MEBO RESEARCH, a patient advocacy 501(c)(3) Public Charity registered in the State of Florida, and a Not For Profit, Limited By Guarantee Company registered in England and Wales.
Thank you for your contribution to this initiative.
Short url for this survey :
https://forms.gle/vem2TjepKobYZPBu8