Further information

In this section we have collated additional information that may be of help to you should you wish to participate in INSIGNIA or find out further details about the study.

Please explore this information using the links below.

Participant Information Sheets (PIS) and Consent Forms (CF)

We have put together downloadable information sheets to help you/your child understand the aims of the research we wish to carry out, and understand what participation in the study will involve.

There are different information sheets for:

  • Participants of different ages (child, young person, adult).
  • Participants who suffer from a genetic disorder (patient) or those who are healthy (control).
  • Parents of children involved in the study.
  • Those who are being asked to provide consent on behalf of another adult.

The information sheets provide detailed information on the research and what will be involved. A shortened study summary explaining the key points of the study is also available.

Different consent forms are also available for different types of participant.

Please look at the information sheets and consent forms that best apply to you/your child.

Information sheets and consent forms

Expenses

If you decide to take part in the study, you/your child will not receive payment but we will pay reasonable expenses incurred as a result of attending study appointments.

Expenses that will be refunded include:

  • Travel costs e.g. train or bus fares
  • Mileage costs for travel by car, motorcycle or bicycle
  • Parking charges within the hospital/clinic

Expense forms

Publications

  • Insights into cancer biology through next-generation sequencing.

    Nik-Zainal S

    Clinical medicine (London, England) 2014;14 Suppl 6;s71-7

  • Mutational signatures: the patterns of somatic mutations hidden in cancer genomes.

    Alexandrov LB and Stratton MR

    Current opinion in genetics & development 2014;24;52-60

  • Signatures of mutational processes in human cancer.

    Alexandrov LB, Nik-Zainal S, Wedge DC, Aparicio SA, Behjati S, Biankin AV, Bignell GR, Bolli N, Borg A, Børresen-Dale AL, Boyault S, Burkhardt B, Butler AP, Caldas C, Davies HR, Desmedt C, Eils R, Eyfjörd JE, Foekens JA, Greaves M, Hosoda F, Hutter B, Ilicic T, Imbeaud S, Imielinski M, Imielinsk M, Jäger N, Jones DT, Jones D, Knappskog S, Kool M, Lakhani SR, López-Otín C, Martin S, Munshi NC, Nakamura H, Northcott PA, Pajic M, Papaemmanuil E, Paradiso A, Pearson JV, Puente XS, Raine K, Ramakrishna M, Richardson AL, Richter J, Rosenstiel P, Schlesner M, Schumacher TN, Span PN, Teague JW, Totoki Y, Tutt AN, Valdés-Mas R, van Buuren MM, van 't Veer L, Vincent-Salomon A, Waddell N, Yates LR, Australian Pancreatic Cancer Genome Initiative, ICGC Breast Cancer Consortium, ICGC MMML-Seq Consortium, ICGC PedBrain, Zucman-Rossi J, Futreal PA, McDermott U, Lichter P, Meyerson M, Grimmond SM, Siebert R, Campo E, Shibata T, Pfister SM, Campbell PJ and Stratton MR

    Nature 2013;500;7463;415-21

  • Mutational processes molding the genomes of 21 breast cancers.

    Nik-Zainal S, Alexandrov LB, Wedge DC, Van Loo P, Greenman CD, Raine K, Jones D, Hinton J, Marshall J, Stebbings LA, Menzies A, Martin S, Leung K, Chen L, Leroy C, Ramakrishna M, Rance R, Lau KW, Mudie LJ, Varela I, McBride DJ, Bignell GR, Cooke SL, Shlien A, Gamble J, Whitmore I, Maddison M, Tarpey PS, Davies HR, Papaemmanuil E, Stephens PJ, McLaren S, Butler AP, Teague JW, Jönsson G, Garber JE, Silver D, Miron P, Fatima A, Boyault S, Langerød A, Tutt A, Martens JW, Aparicio SA, Borg Å, Salomon AV, Thomas G, Børresen-Dale AL, Richardson AL, Neuberger MS, Futreal PA, Campbell PJ, Stratton MR and Breast Cancer Working Group of the International Cancer Genome Consortium

    Cell 2012;149;5;979-93

Ethical Information

This research study has been reviewed by a group of people called a research ethics committee (REC), to protect the interests of participants in the study.

  • INSIGNIA has been reviewed by and received a favorable ethical opinion from the NRES Committee East of England - Norfolk (Reference 13/EE/0302).
  • To ensure compliance with the Adults with Incapacity (Scotland) Act 2000, INSIGNIA has also been reviewed and received a favorable ethical opinion from Scotland A REC (Reference 14/SS/0096).
  • The Office for Research Ethics Committees Northern Ireland (ORECNI) has approved the participant information sheets and consent forms pertaining to adults with incapacity for use in Northern Ireland.

This study has also been reviewed by Research and Development (R&D) departments at NHS Trusts involved in the study.

  • R&D approval has been received from the lead NHS site (Cambridge University Hospitals; Reference A092892).
  • R&D approval from additional NHS Trusts has been sought under the terms of the NIHR UK Rare Genetic Disease Research Consortium Agreement, the Musketeers Memorandum.
  • Further information on the Musketeers Memorandum.
  • For participating NHS Trusts that are not part of the Musketeers Memorandum, individual R&D approval has been sought.
  • INSIGNIA is sponsored by Genome Research Ltd.

Funding & Support

INSIGNIA is funded by awards from the Wellcome Trust.

  • Intermediate Clinical Fellowship awarded to Dr Serena Nik-Zainal; Grant Number 100183/Z/12/Z
  • Wellcome Trust Strategic Award; Grant Number 101126/B/13/Z
  • The Wellcome Trust Strategic Award funds a broad program of research into 'Mutational signatures of DNA damage and repair processes'. This includes INSIGNIA, but also involves research using experimental model systems. The consortium of researchers working together on this is called COMSIG.

We also acknowledge support for the study from the following:

  • The Wellcome Trust Sanger Institute
  • The National Institute for Health Research (NIHR), through the Comprehensive Clinical Research Network
  • The NIHR/Wellcome Trust Clinical Research Facility at Addenbrooke's Clinical Research Centre
COMSIG

Useful Links

  • http://www.yourgenome.org/
    A website established by the Wellcome Trust Sanger Institute which is intended to help people understand genetics and genomic science and the implications for us all.
  • http://www.bsgm.org.uk/
    The British Society For Genetic Medicine (BSGM) is an independent body representing UK human genetics professionals.
  • http://www.bsgm.org.uk/genetics-healthcare-research/nihr-uk-rare-genetic-disease-research-consortium-agreement/
    Information on the National Institute for Health Research (NIHR) UK Rare Genetic Disease Research Consortium Agreement, the Musketeers Memorandum.
  • http://www.crn.nihr.ac.uk/
    As part of the National Institute for Health Research (NIHR), the clinical research network (CRN) helps to provide the infrastructure that allows high-quality clinical research to take place in the NHS, so that patients can benefit from new and better treatments, and we can learn how to improve NHS healthcare for the future.
 

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