Royal College of Obstetricians and Gynaecologists, London.

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1 Cystic Fibrosis Committee meeting 1 Date: 03/03/2015 Location: Minutes: Roya Coege of Obstetricians and Gynaecoogists, London. Confirmed Committee members present: Martin Washaw(Chair) (Present for notes 1 5) Mandy Bryon (MB) (Present for notes 1 5) Andrew Jones (AJ) (Present for notes 1 5) David Lacy (DL) (Present for notes 1 5) Sarah Poppe (SP) (Present for notes 1 5) Ioo Dou (ID) (Present for notes 1 5) Sarah Coins (SC) (Present for notes 1 5) Aexander Darington (AD) (Present for notes 1 5) Heen McCabe (HM) (Present for notes 1 5) Zoe Eiot (ZE) (Present for notes 1 5) In attendance: Ben Doak (NICE) Aix Johnson (NICE) Guideines Commissioning Manager Pubic Invovement Adviser (Present for notes 1 5) (Present for notes 1 5) Vanessa Degado Nunes (VDN) Kate Coes (KC, covering for Annabe Fint) Guideine Lead (Present for notes 1 5) Project Manager (Present for notes 1 5) Shona Burman-Roy (SBR) Senior Research Feow (Present for notes 1 5) Omnia Abdurazeg (OA) Research Feow (Present for notes 1 5) Page 1 of 10

2 Gemma Vianueva (GV) Research Feow (Present for notes 1 5) Timothy Reeves (TR covering for Zosia Beckes) Information Scientist (Present for notes 1 5) Pau Jackin (PJ) Heath Economist (Present for notes 1 5) Observers: None. Apoogies: Annabe Fint Project Manager 1. Wecome and objectives for the meeting The Chair wecomed the Committee members and attendees to the first guideine committee meeting on Cystic Fibrosis. The Committee members and attendees introduced themseves. No members of the pubic asked to observe the meeting. The Chair informed the Committee that apoogies had been received from Annabe Fint. The Chair outined the objectives of the meeting, which incuded: an introduction to guideine deveopment, patient invovement in guideine deveopment and a discussion on the cinica questions for the Cystic Fibrosis guideine. 2. Decarations of interest The Chair confirmed that, for the purpose of managing conficts of interest, the matter under discussion was the diagnosis and management of Cystic Fibrosis. The Chair asked the Committee to verbay decare any interests on appointment and since then. Name Job tite, organisation Decarations of Interest, date decared Type of interest Decision taken Mandy Byron Consutant Cinica Psychoogist and Joint Head of Paediatric Mandy is a member of the UK Heads of Paediatric Psychoogy Specia interest Group. non Page 2 of 10

3 Psychoogy and Pay Services Great Ormond Street Hospita Foundation Trust Mandy Byron Consutant Cinica Psychoogist and Joint Head of Paediatric Psychoogy and Pay Services Great Ormond Street Hospita Foundation Trust Mandy is Co-Chair of the UK Psychosocia Professionas in a Cystic Fibrosis group and a committee member of the Cystic Fibrosis Trust Cinica Advisory Group, the Cystic Fibrosis trust Peer review Oversight Board and the European Cystic Fibrosis Specia Interest Group Mandy has pubished 5 artices reated to Cystic Fibrosis in the past 2 years (detaied beow):. Bryon, M, Havermans, T, Noordhoek, J. (2012) The socia ife of adoescents with cystic fibrosis. Heathcare issues and Chaenges in Adoescents with Cystic Fibrosis. C. Casteani, S Eborn, H Heijerman (eds).european Cystic Fibrosis Society, Karup: Denmark. Randesome, K, Bryon M, Evangei, M (2013) Deveoping a measure of eating attitudes and behaviours in cystic fibrosis Journa of Cystic Fibrosis 12; Aan R. Smyth, Scott C. Be, Snezana Bojcin, Mandy Bryon, Aistair Duff, Patrick Fume, Nataiya Kashirskaya, Anne Munck, Feix Ratjen, Sarah Jane Schwarzenberg, Isabee Sermet-Gaudeus, Kevin W. Southern, Giovanni Page 3 of 10

4 Taccetti, Gerad Urich, Sue Wofe. (2014) European Cystic Fibrosis Society Standards of Care: Best Practice guideines, Journa of Cystic Fibrosis 13 (2014) S23 S42. A Kevin Webb, Mandy Bryon (2014) The Internationa Depression Epidemioogica Study (TIDES): unfinished business? Thorax 2014; 69: , doi: /thoraxjn Bryon, M (2015) Eating Disorders and Disturbed Eating Attitudes and Behaviours Typica in CF. In Watson RR, Diet and Exercise in Cystic Fibrosis, Esevier, San Diego, CA. p Sarah Coins CF speciaist dietician, Nutrition & Dietetic Department, Roya Brompton Hospita On the 5th February 2012, as a member of the Abott Advisory Pane on Pancreatic Exocrine Insufficiency, attended a one off meeting which was competed in her own time and received an honorarium and trave costs in return. On the 7-8th March 2014 she was an invited speaker at the Paediatric Expert Summit in Dubai, sponsored by Abbott fights, transfers and accommodation provided and honorarium received. Competed in own time. Sarah Coins CF speciaist dietician, Nutrition & Dietetic Department, Roya Sarah is the current Chair of the UK Dieticians CF Interest group this roe is vountary and she receives no contributions, she is due to stand down as chair in May Page 4 of 10

5 Brompton Hospita Sarah aso hods the position of Chair of the UK Dieticians CF group, who are writing a consensus document on the Nutritiona management of CF. This roe is vountary and she receives no contributions for this. Aexande r Daringto n Aexande r Daringto n Lay member and PHD student. Lay member and PHD student Aexander is currenty undertaking a PhD studentship as part of the Synthetic Bioogy Centre for Doctora Training, joint funded by the BBSRC (Biotechnoogy and Bioogica Sciences Research Counci) and EPSRC (Engineering and Physica Sciences Research Counci). Additiona funding for the centre itsef and its infrastructure is provided by She Goba Soutions, GaxoSmithKine, Microsoft, DSTL (Defence Science and Technoogy Laboratory), Crysain, Proctor and Gambe, DNA2 and Syngenta. Aexander contributed to a manuscript that is currenty in press. The work was carried out in 2012 and was funded by the CF Trust. The paper was an investigation of the non-nervous innovation of secretions in the airways. In the ong term this research coud inform post-transpant ung care but that is mainy conjecture it was simpy a physioogica/pharmacoogic a basic science study on the airways of the sheep rather than a cinica study. non Page 5 of 10

6 Ioo Dou Consutant Respiratory Paediatrician, Chidren's Hospita for Waes, Cardiff In June 2014, Ioo gave a ecture on chidhood asthma for Novartis Educationa. In December 2014, he gave ectures on asthma for Astra Zeneca Educationa. non Ioo Dou Consutant Respiratory Paediatrician, Chidren's Hospita for Waes, Cardiff In March 2014, he was a member of the Giead Advisory Pane on the use of nebuised aztreonam in CF Zoe Eiott Lay member Zoe is a member of the Cystic Fibrosis Trust Strategic Impementation Board, a ay advisory group for research for patient benefit tria and the Cystic Fibrosis Trust disbanded Principe Advisory Group. Zoe is aso a Lay reviewer for the Cochrane Cystic Fibrosis and Genetic Disorders group. Andrew Jones Consutant and Honorary Reader in Respiratory Medicine and Cystic Fibrosis, North West Lung Centre, University Hospitas South Manchester NHS Foundation Trust Forest Pharmaceuticas have provided sponsorship for Andrew s CF Centre s annua away day team meeting (which he heps to organise and run). Andrew participated in a muticentre project evauating cinica outcome of use of nebuised Aztreonam - this has project is sponsored by Giead Sciences. He has aso spoken at the nationa Irish CF Meeting Giead sponsor the meeting and covered the cost of return trave. Page 6 of 10

7 Andrew is a Trustee of the UK Cystic Fibrosis Trust. David Lacy Genera Paediatrician Wirra University Teaching Hospita NHS Foundation Trust David attended a mea paid for by Chiesi at the European CF conference in Brusses. Heen Parrott Physiotherapist, Cinica Speciaty Lead - Adut CF Therapies Roya Brompton Hospita Received a consutation fee of 500 for participation on an advisory board run by Forest Pharmaceuticas on nebuiser devices Heen Parrott Physiotherapist, Cinica Speciaty Lead - Adut CF Therapies Roya Brompton Hospita Heen annuay attends a professiona study day (ACPCF) which is part sponsored by Forest and part personay funded (January 2015). Heen has pubished work under the foowing tites: Cinica effects of Mannito in aduts with Cystic Fibrosis (co-author, for presentation at the European CF conference, June 2015 in Brusses), Toerabiity of inhaed dry powder Mannito 1 year foow up (co-author) for presentation at the European CF conference (June 2015 in Brusses), Inhaed therapy in CF agents, devices, regimens (co-author, for pubication in June issue of Breathe) and Cystic Fibrosis (Biton and Bush, co-author of the physiotherapy chapter due for pubication in summer Page 7 of 10

8 2015). Sarah Poppe Pharmacist - Leicester Roya Infirmary Chidren s Hospita / De Montfort University Heen personay estabished and attends a CF Physiotherapy prescribers continuing professiona deveopment group which is fuy funding by Forest (incuding speakers fees, trave, expenses and refreshments). March 2015 Sarah attended Cystic Fibrosis Pharmacists Group study day sponsored by Actavis Pharmaceuticas (Forest Laboratories) manufacturer of Coomycin. She aso attended an educationa meeting with unch provided. Sarah was invited to speak on Cystic Fibrosis management at parae study day to NPPG conference for which wi receive honorarium of 100 paid by Profie productions (conference organiser not the pharmaceutica company). Sarah Poppe Pharmacist - Leicester Roya Infirmary Chidren s Hospita / De Montfort University Sarah has had funding approved from Abbvie pharmaceuticas (Synagis manufacturer not of significant reevance to Cystic Fibrosis) to attend Neonata and Paediatric Pharmacists Group Conference November non. Martin Washaw Consutant Physician in Genera and Chest Medicine at Roya Liverpoo and Broadgreen For the ast 5 years, he has provided patients for cinica trias of potentia new therapies from Pharmaceutica companies incuding Vertex, Aptais, AstraZeneca and Nonpersona Page 8 of 10

9 University Hospitas NHS Trust, and The Liverpoo Heart and Chest Hospita NHS Foundation Trust (formery The Cardiothoracic Centre Liverpoo NHS Trust), with a specia interest in Adut Cystic Fibrosis and Lung Cancer. AgiPharma. A remuneration was given to the Liverpoo Heart and Chest Research Funds. The Chair and a senior member of the Deveoper s team noted that the interests decared did not prevent the attendees from fuy participating in the meeting. 3. Presentations The Chair introduced TR, Information Scientist, who gave a presentation on Information Science in guideine deveopment. The Chair introduced PJ, Heath Economist, who gave a presentation on Heath Economics in guideine deveopment. The Chair introduced BD, Guideines Commissioning Manager, who gave a presentation on how NICE guideines are deveoped. The Chair introduced AJ, Pubic Invovement Advisor, who gave a presentation on patient invovement in guideine deveopment. The Committee thanked everyone invoved for their presentations and contribution to the deveopment of the guideine. 4. Questions and discussion The Committee discussed the fina scope for the NICE guideine on Cystic Fibrosis and were given the opportunity to ask questions. OA and VDN ed the Committee through an introduction to drafting protocos, reviewing evidence and an introduction to GRADE. VDN ed the Committee through a discussion on the cinica questions for the Cystic Page 9 of 10

10 Fibrosis guideine. SBR ed the Committee through the process of drafting the protoco for the topic of effectiveness of enzyme repacement in the treatment of exocrine pancreatic insufficiency. 5. Any other business There were no other items of business. MW thanked the Committee for attending and cosed the meeting. Date of next meeting: 21/04/2015 Location of next meeting: Roya Coege of Obstetricians and Gynaecoogists, London. Page 10 of 10

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