Dear <INSERT PARENT’S NAME>

We are contacting you because the surgical department at <INSERT NAME OF HOSPITAL> hospital are taking part in the NETS2HD study to investigate whether the health and wellbeing of children with Hirschsprung’s Disease is affected by the initial operation they undergo.

Between October 2010 and March 2012, anonymous information about all infants who were diagnosed with Hirschsprung’s Disease at less than six months of age had to be reported to a registry run by the National Perinatal Epidemiology Unit. Individual surgical units were required to keep a record of infants whose information they reported during this time period, and it is through these records that <INSERT CHILD’S NAME> surgical team have identified that they may be eligible to take part in the study.

Taking part in the study would involve you completing one questionnaire on behalf of <INSERT CHILD’S NAME>. This would take approximately twenty minutes. We would also ask <INSERT CHILD’S NAME> ‘s surgeon to complete a questionnaire asking about the medical treatments they have had, and we would like to link this information to the answers you give us, and also to information that was submitted to the registry when <INSERT CHILD’S NAME> was first diagnosed.

The enclosed leaflet contains more information about the study, but if you have any questions, you can either contact , or visit the NETS2HD website ( the Hirschsprung’s and Motility Disorders Support Network website ( the Breakaway Foundation website ( or the CHAMPS Appeal website (

You do not have to make any decisions about taking part today, but if you are happy for us contact you to discuss the study further, please complete the form overleaf and return in the enclosed freepost envelope, or email and <INSERT RESEARCH NURSE OR SURGEON’S EMAIL ADDRESS).

Kind Regards,

Mr Gregor Walker Mr Simon KennyProfessor Marian KnightMr Timothy BradnockMr Benjamin Allin

Consultant SurgeonConsultant SurgeonProfessor of Maternal and Child HealthConsultant SurgeonNIHR Doctoral Research Fellow

Royal Hospital for Children, GlasgowAlder Hey Children’s HospitalNational Perinatal Epidemiology UnitRoyal Hospital for Children, GlasgowNational Perinatal Epidemiology Unit

CONSENT TO CONTACT FORM

NETS2HD Study- Six-year outcomes in infants with Hirschsprung’s Disease

Study Contact: Mr Benjamin Allin –

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If you agree, please initial box

  1. I confirm that I have read the attached information relating to the NETS2HD study, and am happy to be contacted by staff in the National Perinatal Epidemiology Unit to discuss the study further

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Name of Participant / Date / Signature