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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

INTERNATIONAL TMAU TESTING LABS


TRIMETHYLAMINURIA TESTING LABS AROUND THE WORLD
All rates are subject to change. Please check with provider


(Site under construction: Last update 07 October 2011. If you know of any other TMAU test center, or if the information below needs updating, please contact us know at info@meboresearch.org)


Orphanet offers a listing of labs in Europe that have TMAU Testing Programs.


MEBO RESEARCH INTERNATIONAL TEST PROGRAM

COUNTRY : UNITED STATES (Test available to all sufferers throughout the world via UPS or FedEx)

MEBO/ TMAU URINE TEST PROGRAM



MEBO Research International
TMAU Test Program Application


Results given consistent with
Primary (genetic) TMAU
or Secondary (acquired) TMAU

results sent by email

TMAU phenotype (urine) test
$150 for 1 sample plus shipping costs
(arranged via UPS)

To start your test process, please fill out the

Online Trimethylaminuria Test
Requisition Form



Test analysis will normally occur in batches of 15




COUNTRY : UNITED KINGDOM LAB : Sheffield Children's Hospital, Department of Clinical Chemistry LOCATION : Sheffield, England; Persons outside the UK can test TYPE OF TESTING AND INSTRUCTIONS : Urine (phenotype) testing; Checks for TMA & TMAO;  Reference range (normal) " TMA <10.9; TMA/TMAO ratio <0.21 CONTACT DETAILS : Nigel Manning,, Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital; email: Nigel.Manning@sch.nhs.uk COST : Free on NHS, Must be referred through GP COST AND WAYS TO TEST : Best option is to give your physician the letter and TMAU information linked below from Nigel Manning, Principal Scientist, Sheffield Hospital. Nigel welcomes emails or phone calls from physicians: ImageChef Custom Images ImageChef Custom Images


COUNTRY : AUSTRALIA LAB :Royal Children's Hospital (RCH) TYPE OF TESTING AND INSTRUCTIONS : Urine testing ?



COUNTRY : CANADA LAB : University Health Network and Mount Sinai HospitalUniversity Health Network and Mount Sinai Hospital LOCATION : University Health Network and Mount Sinai Hospital, Fred A Litwin & Family Center for Clinical Genetics & Genomic Medicine, Toronto, Ontario M5T 3L9 TYPE OF TESTING AND INSTRUCTIONS : genetic testing CONTACT DETAILS : Phone:(416)586-4800 ext 4220; Fax: (416) 619-5523 COST and WAYS TO TEST : Must be referred by a physician to Dr. Chantal Morel for genetic testing. Covered under the National Health Plan.


COUNTRY : CANADA LAB : (Service suspended indefinitely) McGill University Health Centre, Montreal Children's Hospital, Biochemical Genetic Services LOCATION : Montreal TYPE OF TESTING AND INSTRUCTIONS : Urine (phenotype) testing CONTACT DETAILS : Email: annie.capua@mcgill.ca COST and WAYS TO TEST : Must be referred by a physician.



COUNTRY : CHILE Verónica Cornejo E., Jefa de LaboratorioLOCATION :Laboratorio de Genética y Enfermedades Metabólicas LOCATION : INTA, Av. El Líbano 5524 Casilla 138-11, Santiago CONTACT DETAILS :vcornejo@inta.uchile.cl
fono: 56-2-978-1491; Teléfonos Policlínico: 9781466 - 9781467 - 9781542; Teléfonos Laboratorio: 9781484 - 9781543; Fax: 2941254




COUNTRY : FRANCE LOCATION :Hôpital Georges-Pompidou à Paris, LOCATION : Paris. CONTACT DETAILS :service du Pr Germain, joignable au 01-56-09-28-01



COUNTRY : GERMANY LOCATION :University Children´s Hospital, Metabolic laboratory, Im Neuenheimer Feld 430, D-69120 Heidelberg LOCATION : Heidelberg TYPE OF TESTING AND INSTRUCTIONS : Urine testing; Test must be requested by a doctor CONTACT DETAILS :     PD Dr Juergen G. Okun (PhD)      Head of metabolic laboratory and newborn screening      Division of Inherited Metabolic Diseases      University Children´s Hospital      Im Neuenheimer Feld 430      D-69120 Heidelberg      Germany      email: Juergen.Okun@med.uni-heidelberg.de COST :190 Euros. (Rate subject to change, check with provider)



COUNTRY : GERMANY LOCATION : Center for Human Genetics Regensburg, University Hospital, Building D3, Franz-Josef-Strauß-Allee 11, D - 93053 Regensburg, Germany TYPE OF TESTING AND INSTRUCTIONS : DNA (genotype) testing; and Carrier testing. METHOD : Analysis of the entire coding region : sequence analysis; Pre-test email/phone consultation regarding genetic test utilization and decision making is provided to patients/families. Post-test email/phone consultation regarding genetic test results and interpretation is provided to patients/families. CONTACT : phone: (+49) 941 9445410      fax: (+49) 941 944 5402      Director: Ute Hehr, MD email: info@humangenetik-regensburg.de



COUNTRY : IRELAND LOCATION : National Centre for Inherited Metabolic Disorders, Children's University Hospital, Temple St., Dublin 1; CONTACT : Prof Eileen Treacy, Metabolic Consultant, http://www.ncimd.ie/contact.html TYPE OF TESTING AND INSTRUCTIONS : Urine (phenotype) and DNA (genotype) testing; Must be referred by a Dr in writing to the address given; Specimen forwarded to Sheffield Children's Hospital, Dept. Clinical Chemistry, Sheffield, UK, Contact: Nigel Manning, Principal Clinical Scientist (see above) for same urine (phenotype) test



COUNTRY : JAPAN LAB : Showa Pharmaceutical University, Laboratory of Drug Metabolism and Pharmacokinetics LOCATION :Tokyo TYPE OF TESTING AND INSTRUCTIONS : Urine and DNA CONTACT DETAILS :website, Showa Pharmaceutical University, CONTACT : doutai@ac.shoyaku.ac.jp Hiroshi Yamazaki, PhD, Professor Makiko Shimizu, PhD, Research Associate Norie Murayama, PhD, Research Associate



COUNTRY : NEW ZEALAND LAB : Canterbury Health Laboratories LOCATION :Canterbury Health Laboratories,Corner Hagley Ave and Tuam Street, P O Box 151, Christchurch, 8140, New Zealand [b]CONTACT DETAILS : [/b]For general test enquiries LabInfo@cdhb.govt.nz Phone: (+64 3) 364 0300 Fax: (+64 3) 364 0750 Within NZ phone: 0800 THE LAB (0800 843 522) TYPE OF TESTING AND INSTRUCTIONS :Urine testing Tests : TMA & TMA-oxide ratio Test Identifyer and Instructions Ref range: normal is <25 umol/mmol creatinine Test includes dimethylglycine Technique used : NMR Dr referral not required. You can test direct COST : $300NZ (Rate subject to change, check with provider)



COUNTRY : SPAIN / ESPAÑA, Barcelona LAB : Hospital Sant Joan de Déu, Barcelona, Unidad de Enfermedades Metabólicas;  LOCATION : Passeig de Sant Joan de Déu, 2, 08950 Esplugues de Llobregat, Barcelona; TYPE OF TEST AND INSTRUCTIONS : DNA (prueba de genotipado) CONTACT DETAILS : Teléfono: 34 932 53 21 00; Fax: 34 914974863; Sitio web Dra Mercedes Serrano Gimare, MD.


COUNTRY : SPAIN, Madrid Cantoblanco  LAB : Centro de Diagnóstico de Enfermedades Moleculares, Universidad Autónoma de Madrid. Facultad de Ciencias;  LOCATION : Calle Francisco Tomás y Valiente, 7, 28049 CANTOBLANCO, ESPAÑA;  TYPE OF TEST AND INSTRUCTIONS : DNA (prueba de genotipado) CONTACT DETAILS : Teléfono: 34 914974589; Otro teléfono: 34 914974868; Fax: 34 914974863; Pr Magdalena Ugarte Pérez, email: mugarte@cbm.uam.es


COUNTRY : SPAIN, Madrid > LAB : Unidad de Enfermedades Metabólicas.
Servicio de Pediatría. Hospital Ramón y Cajal;  
LOCATION : Cra Colmenar Km 9,1. 28034 Madrid. ESPAÑA; TYPE OF TEST AND INSTRUCTIONS : ADN (prueba de genotipado) CONTACT DETAILS : Teléfono: 34 913368096 Fax: 34 913368417; Mercedes Martinez-Pardo Casanova. PhD. MD, email: mmartinezc.hrc@salud.madrid.org,
Amaya Bélanger Quintana, PhD. MD.

Magdalena Ugarde, M.D.



COUNTRY : SPAIN, Comunidad Valencia, PATERNA LAB : Instituto de Medicina Genómica
IMEGEN - Instituto de Medicina Genómica;  LOCATION : Calle Catedrático Agustín Escardino, 9, E46980 PATERNA, ESPAÑA;  TYPE OF TEST AND INSTRUCTIONS : Diagnóstico molecular de trimetilaminuria (gen FMO3 - secuenciación completa); CONTACT DETAILS : Teléfono: 34 963212340; Otro teléfono: 34 607524365; Fax: 34 963212341; info@imegen.es  Dr. Javier García Planells, Director del laboratorio;  email: Javier.garcia@imegenes >



COUNTRY : SPAIN, Comunidad Valencia; LAB : Fundación Investigación Clínico de Valencia-INCLIVA, Unidad de Genotipado y Diagnóstico Genético LOCATION : AVDA Blasco Ibañez 17, Valencia 46010;  TYPE OF TEST AND INSTRUCTIONS : ADNCONTACT DETAILS : Teléfono: telefono: 963862664; Fax: 963862665; email: a.barbara.garcia@uv.esa.barbara.garcia@uv.es



COUNTRY : UNITED KINGDOM LAB : Sheffield Children's Hospital, Department of Clinical Chemistry LOCATION : Sheffield, England; Persons outside the UK can test TYPE OF TESTING AND INSTRUCTIONS : Urine (phenotype) testing; Checks for TMA & TMAO;  Reference range (normal) " TMA <10.9; TMA/TMAO ratio <0.21 CONTACT DETAILS : Nigel Manning,, Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital; email: Nigel.Manning@sch.nhs.uk COST : Free on NHS, Must be referred through GP COST AND WAYS TO TEST : Best option is to give your physician the letter and TMAU information linked below from Nigel Manning, Principal Scientist, Sheffield Hospital. Nigel welcomes emails or phone calls from physicians: ImageChef Custom Images ImageChef Custom Images


COUNTRY : UNITED KINGDOM LAB : Sheffield Diagnostic Genetics Service LOCATION : Sheffield Children's NHS Foundation Trust, Sheffield Diagnostic Genetics Serice, Sheffield, UK TYPES OF TESTING AND INSTRUCTIONS : Analysis of the entire coding region: sequence analysis; Analyte and Carrier testing; can only accept contact from health care providers CONTACT DETAILS : Ann Dalton, PhD, FRCPath email: ann.dalton@sch.nhs.ukphone (+44) 1142 717003fax: (+44) 1142 750629


COUNTRY : USA LAB : The Human BioMolecular Research Institute (HBRI) LOCATION : Human BioMolecular Research Institute, 5310 Eastgate Mall, San Diego, California 92121, (858) 458-9305, (858) 458-9311 fax TYPE OF TESTING AND INSTRUCTIONS :
Overnight-mail specimen or drop-off if live within geographical area. CONTACT DETAILS : *HBRI, San Diego, California, 5310 Eastgate Mall, San Diego, CA 92121; Telephone: 585 458-9305 Email : TMAUInfo@hbri.org


COUNTRY : USA LAB : University of Colorado, Denver


TMAu Testing Inquiries:
All TMAu testing is required to be ordered by an authorized physician. Please review the collection and handling instructions for TMA samples before sending in samples. 
Children’s Hospital Colorado
Biochemical Genetics Laboratory
TMAu with creatinine – Urine test only.
Price is $265 for clients.
Referral testing by provider ONLY.

Children’s Hospital Colorado
Precision Diagnostics
FMO3 Sanger Sequencing – DNA test
Price is $600
Referral testing by provider ONLY. Please perform the urine test first.

Lab Client Services – 720-777-6711 or LabClientServices@childrenscolorado.org
Website: www.childrenscolorado.org/laborder - scroll towards middle of page and look for biochemical genetics.
LAB DOES NOT BILL PATIENTS OR THEIR INSURANCE COMPANIES.


COUNTRY : USA LAB : Dr. George Preti, Monell Chemical Senses Center LOCATION : Philadelphia, PA; Dr. George Preti forwards specimen to the University of Colorado Denver and Health Sciences Center, Biochemical Genetics Laboratory, Department of Pediatrics TYPE OF TEST AND INSTRUCTIONS : Urine (phenotype)test only (phenotype test), Checks for: TMA level and TMA-O level Reference range: TMAO/TMA ratio >85% TRANSPORT METHOD AND TEMPERATURE: Contact Dr. George Preti and he will send you a kit with instructions CONTACT DETAILS : Please contact Dr. George Preti directly, preferably by email, and he will send you a kit for $75.  Someone will advise with regard to the procedure to follow to get the testing done: email -- Preti@monell.org phone: 1-267-519-4920 http://www.monell.org/contact_us/tmau/ COST : WAYS TO TEST : No doctor's orders required, medical insurance policies will not cover without doctor's orders


COUNTRY : USA LAB : University of Colorado Denver and Health Sciences Center, Biochemical Genetics Laboratory, Department of Pediatrics LOCATION : Denver, Colorado; TYPE OF TEST AND INSTRUCTIONS : DNA Test; CONTACT DETAILS: See website :http://www.uchsc.edu/dnalab/ Email: amber.brand@childrenscolorado.org phone : (720) 777-2723 COST :is usually approximately $600; WAYS TO TEST :Doctor or a TMAU expert's referral required; Officially you must do the urine test first.


COUNTRY : USA LAB : The Mayo Clinic LOCATION : The Mayo Clinic Medical Laboratories, Superior Drive Support Center, 3050 Superior Drive NW, Rochester, MN 55901; The Mayo Clinic forwards sample to another lab TYPE OF TEST AND INSTRUCTIONS : Mnemonic Test WILD105, Mayo Unit Code 90544, Test Name – TRIMETHYLAMINE (FISH ODOR), URINE, CPT Codes – 82491, 80500; Methodology – GC Gas Chromatography **Samples must be shipped Monday – Wednesday only. TRANSPORT METHOD AND TEMPERATURE: Please utilize our Mayo Medical Laboratories website at http://www.mayomedicallaboratories.com/. This site will guide you in getting a specimen to use for testing. If you have further questions please call 800 533 1710”. CONTACT DETAILS : Mayo Medical Laboratories website at http://www.mayomedicallaboratories.com/. This site will guide you in getting a specimen to use for testing. Customer Service staffed with 24-hour personalized service: http://www.mayomedicallaboratories.com/customer-service/index.html United States, Canada · 800.533.1710 · 507.266.5700 · mml@mayo.edu International · 507.266.5700 · mmlglobal@mayo.edu COST : $144.20 (Rate subject to change, check with provider) WAYS TO TEST : With doctor’s orders only; most medical insurance policies will cover


COUNTRY : USA LAB : PreventionGenetics, Molecular Diagnostics and BioBanking, Marshfield, WI LOCATION : 3700 Downwind Drive, Marshfield, Wisconsin 54449 USA TYPE OF TEST AND INSTRUCTIONS : FMO3 DNA test (full sequencing); Deletion/duplication analysis CONTACT DETAILS : Thomas L Winder, PhD, FACMG phone: (715) 387-0484 ext 118fax: (715) 384-3661 email: tom.winder@preventiongenetics.com COST : $670 (Rate subject to change, check with provider)(please confirm when you book) WAYS TO TEST :Test Requisition Form (print and give to your physician) TMAU listed in list on preventiongenetics.com site