MEBO Survey for possible TMAU therapeutic research database  / Encuesta para la base de datos para una posible investigación terapéutica de TMAU
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
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Have you done a urine and/or genetic TMAU test? / ¿Ha realizado una prueba de TMAU de orina y / o genética? *
What TMAU tests have you done ?   ¿Cuál prueba de TMAU ha hecho?
Clear selection
TMAU urine test : what was the diagnosis ?  /  ¿Cuál fue el diagnóstico basado en la prueba de orina para TMAU?  
What was the opinion of the tester/Dr ?  ¿Cuál fue la opinion de su médico?
Clear selection
TMAU urine test : What was the TMA level  ? / ¿Cuál fue el nivel de TMA en la orina?
This will be a number .  Please add the measure unit as well if you know it, (e.g., umol/mmol) / La respuesta sería un número.  Agregue la unidad de medida, si la conoce, por ejemplo, umol/mmol.
TMAU urine test : What was your TMAO level ?  / ¿Cuál fue el nivel de TMAO en la orina?
This will be a number .  Please add the measure unit as well if you know it, (e.g., umol/mmol) / La respuesta sería un número.  Agregue la unidad de medida, si la conoce, por ejemplo, umol/mmol.
From which lab/physician did you do your TMAU urine test ? / ¿De qué laboratorio o consulta de médico usted realizó su prueba de orina para TMAU?
Clear selection
Who was the urine test provider source ? / ¿Qué organización proporcionó su análisis de orina?
Clear selection
Sheffield testers only : was it before 2017 ? (skip if not used Sheffield test) / Para los que realizaron la prueba en Sheffield Childrens Hospital en el Reino Unido:  Fue antes de 2017?
This is to see whether it was the new method or old method. This applies to SmartNutrition and  Ireland also (they source from Sheffield)
Clear selection
TMAU urine test : how many times have you tested ? ¿Cuántas veces se ha hecho la prueba de TMAU?
This is number of samples you have tested
FMO3 genetic test : how did you test ? ¿Se ha realizado la prueba genética de FMO3?
FMO3 genetic test : Did you do genetic test that included FMO3 data, and by which organization? / ¿Se hizo usted una prueba genética que incluye datos de FMO3 y por qué organización?
FMO3 gene test : what was the result interpretation / ¿Cuál fue la interpretación de los resultados de su prueba genética del FMO3?
FMO3 result DATA / Datos de los resultados de FMO3
If you understand the data, or can see numbers and/or letters (AA  GG etc), could you add them here ? e.g. E158K carrier, E308G, V257M, etc / Si usted comprende los datos, o puede ver números y / o letras (AA, GG, etc.), ¿por favor pudiera incluirlos aquí? p. ej., E158K, E308G, V257M, etc.
FMO3 gene : Do you have data for the following ? / Gen FMO3: ¿Tiene datos para lo siguiente?
These are the 12 most common FMO3 variants on the code part. Most are considered 'benign'. It would be helpful if you could add this info ... 23andme users, has an FMO3 page that lists some of them, https://you.23andme.com/tools/data/?query=FMO3 / Estas son las 12 variantes del gen FMO3 más comunes en la parte del código. La mayoría se consideran "benignos". Sería útil si pudiera agregar esta información ... 23andme tienen una página que enumera algunos de ellos. https://you.23andme.com/tools/data/?query=FMO3
aa
ag
gg
cc
ct
tt
other
rs2266782 (158)
rs909530 (285)
rs2266780 (308)
rs1800822 (147)
rs1736557 (257)
rs75904274 (180)
rs2066530 (277)
rs12072582 (132)
rs28363595 (510)
rs2066532 (362)
rs79553697 (407)
rs72549326 (153)
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