• Appendix 1: Arylamine N-Acetyltransferase Nomenclature
  
• Appendix 2: Ethics Committee Approval
  
• Appendix 3: Initial Questionnaire
  
• Appendix 4: Invitation Letters
  
• Appendix 5: Guidelines for using the enema
  
• Appendix 6: Pre-Screening Medical Form
  
• Appendix 7: Screening Findings
  
• Appendix 8: Endoscopic Pathology Report
  
• Appendix 9: Colonoscopy Findings
  
• Appendix 10: Information and Consent Forms for Blood Taking
  
• Appendix 11: FlexiScope Consent Form
  
• Appendix 12: Food Frequency Questionnaire
  
• Appendix 13: Post-Exam Questionnaire
  
• Appendix 14: Glossary of Abbreviations
  

Reproduced with kind permission from David Hein.

A consensus nomenclature for arylamine N-acetyltransferases (EC 2.3.1.5) was published in 1995 (Vatsis, K.P., Weber, W.W., Bell, D.A., Dupret, J.-M., Price Evans, D.A., Grant, D.M., Hein, D.W., Lin, H.J., Meyer, U.A., Relling, M.V., Sim, E., Suzuki, T., and Yamazoe, Y.: Nomenclature for N-acetyltransferases. Pharmacogenetics 5: 1-17, 1995. Since that publication, a large number of new arylamine N-acetyltransferase alleles have been identified. As these alleles are identified, there has not been a systematic procedure for naming the new alleles. This has resulted in confusion regarding nomenclature, particularly for the human alleles. Since many human epidemiological studies investigate associations between arylamine N-acetyltransferase alleles and disease, this confusion in nomenclature has compromised the ability to report and interpret the results of these studies.

A session regarding arylamine N-acetyltransferase gene nomenclature was chaired by Dr. Wendell W. Weber at the First International Workshop for Arylamine N-acetyltransferases held October 22-24, 1998 at the Kuranda Rainforest Resort in Cairns, Australia. A number of issues were discussed, including the gene symbol for arylamine N-acetyltransferase^*, the NAT gene designations in species other than humans, the matter of upper versus lower case for the gene nomenclature, and the method for naming and disseminating nomenclature for newly identified alleles. A consensus was reached to form a arylamine N-acetyltransferase nomenclature committee to assess what changes need to be made in the nomenclature and to serve as a clearing house for naming new arylamine N-acetyltransferase alleles. Investigators in attendance at the meeting and all other interested investigators of the arylamine N-acetyltransferases were encouraged to make suggestions to the nomenclature committee. The committee was requested to maintain a website providing an up to date listing of arylamine N-acetyltransferase alleles. Investigators who identify new alleles are requested to contact one or all members of the committee in order to designate a consensus name for the new allele. The committee was requested to submit an update of the nomenclature to an appropriate journal for publication. The update was published in Pharmacogenetics 10: 291-292, 2000.  The committee continues to seek input regarding the nomenclature, including the possibility of differentiating the nomenclature for humans from that of other species. The committee was asked to post the current nomenclature in order to make this information widely available to the international scientific community. The committee agreed to make the nomenclature case-insensitive and that David W. Hein would maintain the website of arylamine N-acetyltransferase nomenclature at: http://www.louisville.edu/medschool/pharmacology/NAT.phpl

^* At the request of the arylamine N-acetyltransferase nomenclature committee, the HUGO nomenclature committee (www.gene.ucl.ac.uk/nomenclature) agreed to designate NAT as the official gene symbol of arylamine N-acetyltransferase

Arylamine N-acetyltransferase nomenclature committee:

David W. Hein, Ph.D.
Department of Pharmacology and Toxicology
University of Louisville School of Medicine
Louisville, Kentucky 40292 USA
Email:  d.hein@louisville.edu

Denis M. Grant, Ph.D.
Genetics and Genomic Biology Program Research Institute
The Hospital for Sick Children
555 University Avenue Toronto
Ontario M5G 1X8, Canada
Email:  grant@sickkids.on.ca

Edith Sim, D. Phil.
Department of Pharmacology
University of Oxford
Mansfield Road Oxford OX1 3QT, UK
Email:   esim@molbiol.ox.ac.uk

Initial Letter

Dear «Salutation»

PREVENTING BOWEL CANCER BY SCREENING

We would like to offer you a free screening test which aims to reduce your risk of developing bowel cancer. This test is called the Flexi-Scope test. It is being offered as part of a research trial by your general practice together with the Imperial Cancer Research Fund and The General Infirmary at Leeds. We have included an information leaflet which explains more about the test.

We have made an appointment for you at the time below. You will note that your appointment is at the weekend. This is because of the waiting list initiative which means there are no weekend slots for screening at present.

Please would you telephone us as soon as possible to confirm your appointment. As screening of the 3,000 people in Leeds is almost complete we cannot offer you a different day if this is not convenient.

Please read the information leaflet carefully. If you have any queries or concerns, just leave us a message and we will return your call.

PLEASE CAN YOU CONFIRM BY «Day» «Date» BY «Time». OTHERWISE WE WILL GIVE THIS APPOINMENT TO SOMEONE ELSE.

Yours sincerely

Dr Chris Macklin

___________________________________________________________________

FLEXI-SCOPE TEST APPOINTMENT

Day:    «Day» 

Date:   «Date»

Time:    «Time»

Place:    The General Infirmary at Leeds, Great George Street, Leeds, LS1 3EX

Telephone:  0113 292 3310 (24 hours) To confirm, change or cancel your appointment or if you have any questions or concerns.

Reminder Letter

Dear «Salutation»

FLEXI-SCOPE SCREENING

I am writing to remind you of your appointment on:

«Day»     «Date»   at   «Time».

I enclose a map of The General Infirmary at Leeds with directions to the Endoscopy Unit.  Parking is £1.40 for up to 2 hours and is available in the multi-storey car park as shown on the map.  Please allow time to find a space.

Please find enclosed your enema and guidelines for its use. Please read through them very carefully.

You will wear a short hospital gown for the examination.  For modesty, you may wish to bring your own dressing gown to wear over it, and slippers. Please wear the minimum of jewellery and bring your reading glasses if you use them. To help you fill in a form about medicines you take, you may wish to bring in  your repeat prescription request form. 

If you have any queries, please telephone me at the Endoscopy Unit on 0113 292 3310.

We look forward to seeing you.

Yours sincerely

Dr Chris Macklin

IT IS IMPORTANT THAT YOU INFORM US IMMEDIATELY IF YOU CANNOT ATTEND.

Repeat Appointment Letter

Dear «Salutation»

PREVENTING BOWEL CANCER BY SCREENING

Recently we wrote to you to offer you a free screening test which aims to reduce your risk of developing bowel cancer. This test is called the Flexi-Scope test. It is being offered as part of a research trial by your general practice together with the Imperial Cancer Research Fund and The General Infirmary at Leeds. We have included an information leaflet which explains more about the test.

We are able to offer the test to only one-third of the 200,000 people throughout the UK who express an interest in bowel cancer screening. You are one of the group who have been selected at random to be screened.

We have had a very good response to our invitations to screening and as you did not respond, we have had to offer your appointment to someone else. I apologise for this, but have made another appointment for you at the time below.

Please would you telephone us immediately to confirm your appointment. You can have another appointment if it is not convenient.

Please read the information leaflet carefully. If you have any queries or concerns, just leave us a message and we will return your call.

Yours sincerely

Dr Chris Macklin

_____________________________________________________________________

FLEXI-SCOPE TEST APPOINTMENT

Day:    «Day» 

Date:     «Date»

Time:    «Time»

Place:    Endoscopy Unit,

The General Infirmary at Leeds, Great George Street, Leeds, LS1 3EX

Telephone:  0113 292 3310 (24 hours) To confirm, change or cancel your appointment or if you have any questions or concerns.

Information Sheet for Controls

Invitation to take part in a Research Project to understand why some people get polyps but not others.

- it may be to do with what we eat and the different ways our bodies process foods we eat.

There is still a lot to be learned about why polyps develop, although we know that diet plays an important role. Foods are broken down in the body in different ways by different people. This is because we have many food processing enzymes in our bodies and we vary in the efficiency with which our enzymes work.

Here in Leeds we are conducting research to try to find out which foods and which food processing enzymes are involved in producing bowel polyps. We may as a result be able to advise susceptible people to reduce their intake of certain foods and so avoid getting polyps.

In order to do this we need to look for differences between those people with polyps with those people with a clear Flexi-Scope test such as yourself.

What does the project involve for you?

  - giving a small blood sample.

If you agree then we will arrange for a nurse to visit your home and take the blood sample.  This will enable us to examine the genes which produce the food processing enzymes.

Important

·         This research is not part of the Flexi-Scope test.

·         You are free not to participate.

·         If you would be happy to take part or require more information please telephone our helpline on 0113 2923310 and leave a message.

Information Sheet for Low Risk Polyps

Invitation to take part in a Research Project to understand why some people get polyps but not others.

- it may be to do with what we eat and the different ways our bodies process foods we eat.

The polyp(s) found at your Flexi-Scope test were small and have been completely removed.  About one in five people have a polyp, so you can see that it is quite common.  Rarely, small polyps can grow into cancers if left for a long time but your polyps have been removed.

There is still a lot to be learned about why polyps develop, although we know that diet plays an important role. Foods are broken down in the body in different ways by different people. This is because we have many food processing enzymes in our bodies and we vary in the efficiency with which our enzymes work.

Here in Leeds we are conducting research to try to find out which foods and which food processing enzymes are involved in producing bowel polyps. We may as a result be able to advise susceptible people to reduce their intake of certain foods and so avoid getting polyps.

What does the project involve for you?

  - giving a small blood sample.

This will enable us to examine the genes which produce the food processing

enzymes.

Important

·         This research is not part of the Flexi-Scope test.

·         You are free not to participate

·         If you do not wish to participate, this will not affect your Flexi-Scope test results or any subsequent investigations you may require.

·         If you require more information please ask the nurse before you leave the unit or telephone our helpline on 0113 2923310.

Information Sheet for High Risk Polyps

Invitation to take part in a Research Project to understand why some people get polyps but not others.

- it may be to do with what we eat and the different ways our bodies process foods we eat

There is still a lot to be learned about why polyps develop, although we know that diet plays an important role. Foods are broken down in the body in different ways by different people. This is because we have many food processing enzymes in our bodies and we vary in the efficiency with which our enzymes work.

Here in Leeds we are conducting research to try to find out which foods and which food processing enzymes are involved in producing bowel polyps. We may as a result be able to advise susceptible people to reduce their intake of certain foods and so avoid getting polyps.

What does the project involve for you?

  - giving a small blood sample which can be taken at the same time as the intravenous sedation at the time of the colonoscopy.

This will enable us to examine the genes which produce the food processing

enzymes.

Important

·         This research is not part of the Flexi-Scope test.

·         You are free not to participate

·         If you require more information please ask the nurse before you leave the unit or telephone our helpline on 0113 2923310.