40 results on '"Bullivant, J."'
Search Results
2. P410 Liver involvement in myotubular and centronuclear Myopathy: data from the MTM & CNM patient registry
- Author
-
Bullivant, J., primary, Ward, E., additional, Lennox, A., additional, Lawlor, M., additional, Jungbluth, H., additional, Beggs, A., additional, Graham, R., additional, Heidemann, M., additional, Wood, M., additional, Page, J., additional, Cowling, B., additional, Voermans, N., additional, Foley, R., additional, Dowling, J., additional, Bettolo, C Marini, additional, Kyrana, E., additional, and Dhawan, A., additional
- Published
- 2023
- Full Text
- View/download PDF
3. P311 Facioscapulohumeral muscular dystrophy European patient survey: assessing patient preferences in clinical trial participation
- Author
-
McNiff, M., primary, Hawkins, S., additional, Haase, B., additional, Bullivant, J., additional, McIver, T., additional, Mitelman, O., additional, Emery, N., additional, Tasca, G., additional, Voermans, N., additional, and Diaz-Manera, J., additional
- Published
- 2023
- Full Text
- View/download PDF
4. Governance in the Public Sector
- Author
-
Hunting, S. A., primary, Bullivant, J., additional, and Corbett-Nolan, A., additional
- Published
- 2020
- Full Text
- View/download PDF
5. A revised classification of suspension feeders
- Author
-
Bullivant, J. S.
- Published
- 1968
6. Music, archives, and colonial encounter in the Cold War: a case study from British Guiana
- Author
-
Bullivant, J
- Published
- 2023
7. P.04 New developments and data highlights in the international myotubular and centronuclear myopathy patient registry
- Author
-
McDonald, S., primary, Bullivant, J., additional, Lennox, A., additional, den Hollander, A., additional, Saegert, C., additional, Lynch, O., additional, Moat, D., additional, Graham, R., additional, Schara-Schmidt, U., additional, Bönnemann, C., additional, Jungbluth, H., additional, Buj-Bello, A., additional, Dowling, J., additional, and Marini-Bettolo, C., additional
- Published
- 2022
- Full Text
- View/download PDF
8. REGISTRIES AND CARE OF NMD
- Author
-
Ogden, C., primary, Simon, S., additional, McKenna, J., additional, Cardiff, S., additional, Wilkins, J., additional, Watling, B., additional, Bullivant, J., additional, Das, J., additional, Leary, B., additional, Turner, C., additional, Tye, B., additional, Fowler, M., additional, Owens, P., additional, Braithwaite, L., additional, Woods, S., additional, Osredkar, D., additional, Palmafy, B., additional, Chamora, T., additional, Guglieri, M., additional, Campbell, C., additional, and Ambrosini, A., additional
- Published
- 2021
- Full Text
- View/download PDF
9. SMA – OUTCOME MEASURES AND REGISTRIES
- Author
-
Das, J., primary, Hodgkinson, V., additional, Rodrigues, M., additional, Bullivant, J., additional, Walker, H., additional, Straub, V., additional, Campbell, C., additional, Guglieri, M., additional, and Ambrosini, A., additional
- Published
- 2021
- Full Text
- View/download PDF
10. CONGENITAL MYOPATHIES – CENTRONUCLEAR MYOPATHIES
- Author
-
Bullivant, J., primary, Porter, B., additional, Murphy, L., additional, Render, L., additional, Bellgard, M., additional, Lennox, A., additional, Spring, M., additional, Hollander, A., additional, Bönnemann, C., additional, Jungbluth, H., additional, Buj-Bello, A., additional, Dowling, J., additional, and Marini-Bettolo, C., additional
- Published
- 2021
- Full Text
- View/download PDF
11. OUTCOME MEASURES
- Author
-
Annoussamy, M., primary, Eggenspieler, D., additional, Camino, E., additional, Porter, B., additional, Bullivant, J., additional, Imber, L., additional, Murphy, L., additional, Hughes, Z., additional, Hughes, W., additional, and Servais, L., additional
- Published
- 2021
- Full Text
- View/download PDF
12. The allocation of educational resource opportunities in the London Borough of Havering
- Author
-
Bullivant, J. R. N.
- Subjects
370 ,Education & training - Published
- 1981
13. CONGENITAL MYOPATHIES (CNM)
- Author
-
Bullivant, J., primary, Murphy, L., additional, Napier, K., additional, Render, L., additional, Hunter, A., additional, Spring, M., additional, Lennox, A., additional, Lochmuller, H., additional, Bellgard, M., additional, and Marini-Bettolo, C., additional
- Published
- 2018
- Full Text
- View/download PDF
14. SMA CLINICAL DATA, OUTCOME MEASURES AND REGISTRIES
- Author
-
Bullivant, J., primary, Hodgkinson-Brechenmacher, V., additional, Rodrigues, M., additional, Straub, V., additional, Dawkins, H., additional, Campbell, C., additional, and Goemans, N., additional
- Published
- 2018
- Full Text
- View/download PDF
15. OUTCOME MEASURES: EP.322 Relevance of maximal performance measurement during real-life ambulation in neuromuscular diseases: patients' and caregivers' perspectives
- Author
-
Annoussamy, M., Eggenspieler, D., Camino, E., Porter, B., Bullivant, J., Imber, L., Murphy, L., Hughes, Z., Hughes, W., and Servais, L.
- Published
- 2021
- Full Text
- View/download PDF
16. Myotubular/centronuclear myopathy patient registry: accelerating the pace of research and treatment
- Author
-
Takeuchi, F., primary, Bullivant, J., additional, Napier, K., additional, Radochonski, M., additional, Render, L., additional, Hunter, A., additional, Spring, M., additional, Lennox, A., additional, Bellgard, M., additional, and Lochmüller, H., additional
- Published
- 2017
- Full Text
- View/download PDF
17. G488(P) Absence of dna polymerase chain reaction in neonatal blood cultures could lead to earlier discharge, better antibiotic stewardship and significant financial savings
- Author
-
Shaw, E, primary, Bullivant, J, additional, Ridgeway, E, additional, Clark, S, additional, and Pilling, E, additional
- Published
- 2017
- Full Text
- View/download PDF
18. Myotubular and Centronuclear Myopathy Patient Registry: Accelerating the pace of research and treatment
- Author
-
Bullivant, J., primary, Napier, K., additional, Radochonski, M., additional, Render, L., additional, Hunter, A., additional, Spring, M., additional, Lennox, A., additional, Bellgard, M., additional, and Lochmüller, H., additional
- Published
- 2017
- Full Text
- View/download PDF
19. P.109 - Myotubular/centronuclear myopathy patient registry: accelerating the pace of research and treatment
- Author
-
Takeuchi, F., Bullivant, J., Napier, K., Radochonski, M., Render, L., Hunter, A., Spring, M., Lennox, A., Bellgard, M., and Lochmüller, H.
- Published
- 2017
- Full Text
- View/download PDF
20. OD10 - Myotubular and Centronuclear Myopathy Patient Registry: Accelerating the pace of research and treatment
- Author
-
Bullivant, J., Napier, K., Radochonski, M., Render, L., Hunter, A., Spring, M., Lennox, A., Bellgard, M., and Lochmüller, H.
- Published
- 2017
- Full Text
- View/download PDF
21. Modernism, Politics, and Individuality in 1930s Britain: The Case of Alan Bush
- Author
-
Bullivant, J., primary
- Published
- 2009
- Full Text
- View/download PDF
22. The pharyngeal cells of Zoobotryon verticillatum (delle chiaje) a gymnolaemate bryozoan.
- Author
-
Bullivant, J. S. and Bils, R. F.
- Published
- 1968
- Full Text
- View/download PDF
23. The method of feeding of lophophorates (bryozoa, phoronida, Brachiopoda).
- Author
-
Bullivant, J. S.
- Published
- 1968
- Full Text
- View/download PDF
24. Photographs of Antarctic bottom fauna.
- Author
-
Bullivant, J. S.
- Published
- 1961
- Full Text
- View/download PDF
25. CONGENITAL MYOPATHIES (CNM): P.145Myotubular and centronuclear myopathy patient registry: accelerating the pace of research and treatment.
- Author
-
Bullivant, J., Murphy, L., Napier, K., Render, L., Hunter, A., Spring, M., Lennox, A., Lochmuller, H., Bellgard, M., and Marini-Bettolo, C.
- Subjects
- *
MUSCLE diseases , *CONGENITAL disorders , *MEDICAL registries , *T cells , *GENE therapy , *CD antigens - Published
- 2018
- Full Text
- View/download PDF
26. Sterilisation of Colchicine Injection
- Author
-
Smith, G, primary, Bullivant, J M, additional, and Cox, P H, additional
- Published
- 1963
- Full Text
- View/download PDF
27. An Oceanographic Survey of the Ross Sea
- Author
-
BULLIVANT, J. S., primary
- Published
- 1959
- Full Text
- View/download PDF
28. ChemInform Abstract: HCL‐KATALYSIERTE ISOMERISIERUNG VON 1,1‐DIMETHYL‐CYCLOPROPAN
- Author
-
BULLIVANT, J., primary, SHAPIRO, J. S., additional, and SWINBOURNE, E. S., additional
- Published
- 1970
- Full Text
- View/download PDF
29. Hydrogen Chloride Catalyzed Isomerization of 1,1-Dimethylcyclopropane
- Author
-
Bullivant, J., primary, Shapiro, J. S., additional, and Swinbourne, E. S., additional
- Published
- 1969
- Full Text
- View/download PDF
30. G488(P) Absence of dna polymerase chain reaction in neonatal blood cultures could lead to earlier discharge, better antibiotic stewardship and significant financial savings
- Author
-
Shaw, E, Bullivant, J, Ridgeway, E, Clark, S, and Pilling, E
- Abstract
BackgroundNewborns with risk factors for early onset sepsis are treated with intravenous antibiotics until a negative blood culture result. The absence of fungal and bacterial deoxyribonucleic acid polymerase activity could indicate a negative result during blood culture incubation. Cognitor Minus looks for DNA polymerase activity and is designed to report negative samples after 12 hours of incubation. A non-negative result is reported as ‘not determined’.AimsWe piloted if Cognitor Minus could lead to earlier detection of negative results in well newborns on the postnatal wards.MethodsOur laboratory ran parallel validation analysis on neonates with sepsis risk factors. All infants were clinically managed using the 36 hours blood culture result to determine negativity. The results from Cognitor Minus and time difference of reporting were compared with our current system.Results116 samples had parallel analysis. 90 were in well postnatal babies, who had a blood culture result. Cognitor Minus gave no false negatives. There were 82 negative results with 8 not determined, giving a 100% specificity for negative blood culture result, with a 91.1% negative predictive value. 12 infants were treated for 5 days despite a negative blood culture result due to an elevated CRP, this did not correlate with the ‘not determined’ results. Cognitor Minus came to a negative result on average 10 hours 8 min earlier (95% confidence intervals 8:55–11:21 hours).DiscussionClinical implementation of this system could reduce antibiotic exposure and length of stay. This would have potential savings for healthcare providers. Our study estimated a saving of £47 000 PA for the NHS trust. A further study is needed to investigate the safety of DNA microbial polymerase detection for clinical use as our population had no positive blood culture samples. Our current work is using samples from babies admitted to neonatal intensive care with a higher expected proportion of positive blood culture samples to ensure the tests ability to detect a positive sample.
- Published
- 2017
- Full Text
- View/download PDF
31. Direct Observation of Spawning in the Blacklip Pearl Shell Oyster (Pinctada margaritifera) and the Thorny Oyster (Spondylus sp.).
- Author
-
BULLIVANT, J. S.
- Published
- 1962
- Full Text
- View/download PDF
32. Stomach Contents of Spawning Quinnat Salmon.
- Author
-
BULLIVANT, J. S.
- Published
- 1959
- Full Text
- View/download PDF
33. Appendicitis risk prediction models in children presenting with right iliac fossa pain (RIFT study): a prospective, multicentre validation study
- Author
-
Dmitri Nepogodiev, Richard JW Wilkin, Catherine J Bradshaw, Clare Skerritt, Alasdair Ball, Waaka Moni-Nwinia, Ruth Blanco-Colino, Priyesh Chauhan, Thomas M Drake, Matteo Frasson, Oliver Gee, James C Glasbey, Jacob H Matthews, Gabriella L Morley, David N Naumann, Francesco Pata, Antonio S Soares, Aneel Bhangu, SH Abbas, AM Abdelgadir, A Abdelrahman, M Abdelrahman, A Abdelwahed, Y Abou El Ella, M Abulafi, A Acharya, ME Adam, RE Adams, SO Adegbola, A Adimonye, M Adnan, S Afshar, A Ahad, J Ahel, DP Ahern, A Ahmad Asmadi, B Ahmed, G Ahmed, OS Ahmed, S Ahmed, K Akbari, O Akinsola, W Al-Khyatt, B Al-Sarireh, M Al-Sheikh, M Alani, R Alexander, T Alhammali, M Ali, A Aljorfi, M Allen, J Allington, A Alshafei, R Amarasinghe, A Amayo, V Amin, Thuva Amuthalingam, L Anandan, O Anderson, SM Andreani, B Andrews, A Ang, B Aravind, JE Archer, MA Aremu, S Arunachalam, N Aruparayil, DL Ashmore, O Ashour, N Ashraf, N Assaf, H Avalapati, OO Awokoya, J Ayube-Brown, T Badenoch, R Bagga, A Baginski, S Bailey, STR Bailey, C Baird, B Baker, EJ Balai, A Balasubramaniam, SK Bandyopadhyay, A Banks, H Bansal, W Barnieh, A Barrie, CA Barter, J Bastianpillai, WD Beasley, CR Bell, J Bell, D Beral, BJM Berry, KE Bevan, V Bevan, Shiv Bhanderi, A Bhargava, D Bilku, A Birindelli, OD Blackford, JEM Blackwell, L Blake, Natalie S Blencowe, TD Boam, C Boereboom, M Bogdan, P Bohra, JC Bolger, W Bolton, S Bond, CM Borg, K Borghol, PR Boshier, N Bouhadiba, J Bowen, H Bowerman, CR Bowman, H Boyd-Carson, CJ Bradshaw, G Branagan, P Brennan, M Brett, HK Brewer, H Brewer, C Bronder, A Brown, AG Brown, CE Brown, M Brown, R Brown, S Buckley-Jones, A Budzanowski, W Bukhari, C Bull, JK Bullivant, KM Burns, D Burnside, A Busuttil, BE Byrne, CK Byrnes, M Caldwell, R Callan, FC Cameron, U Campbell, UM Campbell, W Campbell, CA Carden, CFW Carder, K Carney, H Cartwright, P Cay, A Chalk, B Chambers, A Champsi, D Chan, TCW Chan, SB Chandler, J Chapman, A Charalabopoulos, B Chasty, M Chatzikonstantinou, WL Cheah, CS Chean, S Cheng, SA Cheng, M Cheruvu, MY Chin, IA Chishti, S Choi, SM Chok, B Chong, JH Choong, M Chowdhary, F Chowdhury, CH Choy, L Christian, P Christopoulos, K Chui, M Cipparrone, GL Clark, SA Clarke, SJ Cleeve, KD Clement, B Clements, C Clements, JD Clements, JM Clements, JS Clements, JA Clements, R Clingan, L Cloney, ECS Clough, PO Coe, O Collier-Wakefield, DW Colliver, DA Colvin, TM Connelly, MJ Connor, V Cook, F Cooke, F Cooper, AE Cotton, DG Couch, L Cousins, D Coyle, W Creasy, RL Cresner, A Crone, K Cross, J Crozier, P Cunha, NJ Curtis, N D'Souza, H Dagash, S Dalmia, I Daniels, D Danquah-Boateng, FA Dar, K Dart, A Das, R Daureeawoo, S Davidson, JR Davidson, PL Davies, S Davis, V Daya Shetty, A De-Manzoni-Garberini, JA De-Marchi, EA Dean, S Dean, C Delimpalta, S Denley, G Dennison, AA Devine, S Dharamavaram, AA Dhari, F Di Franco, S Di Saverio, C Dobson, JA Docherty, C Doherty, G Donaldson, NO Donohoe, O Donohoe, E Douka, T Doulias, M Downey, C Doyle, N Drye, DT Du, JG Dudek, PG Dunning, ARS Dyal, NJ Eardley, L Earnshaw, S Easdon, SE Edwards, RJ Egan, S El-Masry, O El-Tayar, CR Elbourne, S Elgaddal, M Elseedawy, M Elshaer, OH Elsharnoby, WMA Elzeneini, KM Emslie, NFT Engall, B Ertansel, HD Esmail, C Ettles, J Evans, JD Evans, A Everden, M Fadel, SE Fahmy, CJ Fairfield, BF Fanibi, Valeria Farina, SM Farrell, EZ Farrow, JA Fasuyi, G Faulkner, D Fawkner-Corbett, F Fawzi, M Fehervari, N Ferguson, JG Finch, H Finlayson, T Flack, W Foers, NM Foley, K Ford, A Forgie, A Foster, JD Foster, AMW Fox, N Francis, D Franklin, H Froud, HL Fuller, E Gaines, J Galea, E Gammeri, J Garnham, J Garvin, Z Gates, R Gentry, I Ghaffari, S Ghatorae, AL Gidwani, TG Gilbert, TM Gilbert, S Gill, M Gillespie, J Gillick, A Giorga, K Gopalakrishnan, S Gopalswamy, S Gopinath, R Gormely, G Govind, C Grant, J Graveston, J Gray, RT Gray, D Griffith, JP Griffith, Ewen A Griffiths, SN Griffiths, EJ Griggs, S Grosvenor, T Grove, M Gulamhussein, J Guliani, A Gummaraju, S Gunning, SV Gurjar, S Guru-Naidu, S Gurung, H Habib, L Hackney, James B Haddow, S Hajibandeh, C Halkias, NJ Hall, RN Hamelmann, M Haneef, MS Haneef, Z Hanif, C Hanley, AJ Hann, T Hanna, E Hardy, A Harlinska, F Harper, RL Harries, A Harris, Grant Harris, MP Harris, R Hasan, A Hassane, JR Hatt, Z Haveliwala, W Hawkins, Z Hayat, C Hayes, KRM Hebbar, L Henderson, LT Henderson, PJJ Herrod, P Hever, LM Hickey, G Hicks, JM Hodgson, M Hoff, A Hollingsworth, A Hook, ST Hornby, E Horsfield, EE Howie, L Huang, NJ Hudson-Peacock, DL Hughes, KA Hureibi, A Hussain, N Hussain, SA Hussaini, A Hussein, B Hutchinson, YMS Ibrahim, S Ikram, T Ilozue, E Iosif, MR Iqbal, S Irukulla, R Irwin, N Islam, P Ivey, CR Jackson, A Jackson, SMH Jah, A Jain, S Jain, Sarus Jain, GM Jama, NB Jamieson, S Janardanan, B Jasinski, D Jenner, E Jerome, B Johnson, A Johnstone, S Jokhan, A Jones, CE Jones, CS Jones, E Jones, L Jones, U Kabir, S Kabwama, M Kamal, IW Kamande, V Kanakala, M Kannegieser-Bailey, S Kaptanis, MJ Karim, RS Karwal, G Kaur, R Keegan, A Kelay, ND Kennedy, DA Kent, A Khair, K Khan, S Khan, A Khasria, H Kho, J Kilkenny, R King, J Kinross, EN Kirkham, B Knight, R Kochupapy, C Koh, O Kouli, A Krishnamoorthy, S Krivan, K Kumar, S Kumar, VWS Kung, R Kuo, G Lafaurie, CW Lai, N Lal, S Lawday, S Layman, GR Layton, A Lazzaro, L Lecky-Thompson, KA Lee, KJ Lee, M Lee, SL Lee, PA Leighton, RP Leitch, HC Lennox-Warburton, EL Leung, CH Li, JM Lim, C Limb, G Ljungqvist, G Lloyd, S Lodhia, PC Logan, M Long, P Long, RH Long, A Longshaw, C Louw, JN Lund, C Ly, MJ Lynch Wong, JKY Ma, A Macdonald, EGE Macinnes, T Magro, R Mahapatra, B Mahendran, F Mahmood, A Mahmoud, D Mahon, D Mai, A Maina, CP Major, R Makhija, Y Malam, A Malik, K Malik, SN Malik, VM Manda, KM Manektella, C Mann, P Manoharan, R Manson, S Mansoor, MM Mansour, S Mansour, F Maqboul, D Maragouthakis, G Marangoni, S Mardhiah, H Maripi, P Marriott, L Marsh, G Marshall, A Martin, LM Martin, E Martinou, R Mashar, John Mason, M Masood, G Mathew, K Maude, E Mazumdar, A Mc-Dermott, D Mcarthur, RS Mccain, S McCain, C Mccann, P Mccaughey, SJ Mccluney, J Mccullough, D Mcdonnell, NA Mcdowall, JE McEntee, K McGlynn, D Mcgrath, O Mcgucken, S Mcilwaine, AC Mcilwrath, SC Mckay, MA McKelvie, M Mckenna, J Mckeon, KL Mckevitt, NC Mckinley, D McLaughlin, SV McMahon, D Mcmorran, L McNally, M Mcquaid, DM Mcwhirter, K Mealy, A Mears, D Menzies, H Merai, RJ Mersh, M Miguras, D Milgrom, K Miller, J Milward, S Mirza, AT Misky, D Mistry, MJ Mitchard, RM Mitru, IM Mohamed, Imran Mohamed, TM Mohamed, WO Mohamed, N Mohd, C Moore, J Moradzadeh, TEM Morrison, V Morrison-Jones, Dion G Morton, BS Mothe, Fh Motiwala, D Motter, NG Mowbray, Z Mughal, J Mulsow, N Mundkur, A Muntean, C Murphy, R Murphy, MP Murray, M Muzaffar, A Myatt, A Nadeem, D Nagarajan, S Nagendram, A Nair, MK Nair, MS Nair, KN Naismith, K Nambiar, GR Nana, Z Nash, P Nastro, S Nazarian, G Neagle, A Neale, PM Neary, RC Newton, M Ng, S Ng, O Niaz, S Nickson, D Nicol, E Nimako, MS Noor Mohamed, M Nyeko-Lacek, BR O'Connor, E O'Neill, N O'Neill, D O'Sullivan, J O'Brien, M Oakey, N Obeid, A Odeh, S Ogboru, C Ogbuokiri, B Okekunle, E Okorocha, O Olagbaiye, JB Olivier, R Ooi, P Orawiec, M Orizu, N Orme, R Ormiston, C Paget, A Pal, LK Palani-Velu, Y Pan, N Panda, V Pandey, R Pandya, D Pandya, KR Paramasevon, C Pardy, MJ Parkola, Sandro Pasquali, AS Patel, BY Patel, C Patel, H Patel, N Patel, RT Patel, S Patel, Y Patel, MM Patel, SD Patil, CJ Payne, RE Payne, JCH Pearce, L Pearce, A Pedder, CB Peirce, GB Peiris, A Peleki, Gianluca Pellino, V Pento, D Peprah, HS Perera, MI Perera, L Phelan, D Photiou, R Pierre, JP Pilkington, Thomas D Pinkney, B Pisavadia, A Poacher, M Podda, H Pollard, D Popova, M Poudevigne, A Prideaux, UP Pullabatla Venkata, A Quddus, S Quill, M Rabie, MR Rabie, RW Radwan, JF Rae, A Rahim, LS Rahmani, S Rajagopal, R Rajaram, N Rajaretnam, Y Rajjoub, H Rallage, S Ramcharan, S Ranathunga, M Rao, VSR Rao, A Raofi, M Rashid, A Rate, R Ravindran, M Raymond, SS Raza, A Reddy, EP Redman, AE Redmond, S Rekhraj, S Renshaw, D Rex, M Rezacova, S Rezvani, B Ribeiro, JE Rich, TD Richardson, S Rigby, B Rigney, S Rinkoff, HD Robb, C Robertson, D Robinson, A Robinson, V Rodger, R Rolph, S Roomi, NPG Roth, K Rothnie, C Roy, S Rupani, DG Rutherford, R Sacks, N Saghir, A Saha, SJ Sahay, K Sahnan, Y Salama, S Salim, M Samuel, S Sana, L Sandu, P Sarmah, J Sarveswaran, SMF Saunders, A Savill, F Savioli, JR Schuster Bruce, JF Sebastian, TC Seddon, N Seneviratne, M Seth, T Setshwaelo, E Sezen, P Sgardelis, A Sgrò, C Shah, J Shah, K Shah, SM Shah, Z Shakoor, MS Shalaby, V Shanmuganathan, K Shanmugarajah, A Sharma, P Sharma, OL Sharp, JA Shepherd, MA Sherif, S Shet, G Shingler, MH Shiwani, D Shreshta, T Sian, MN Siddiqui, ZA Siddiqui, KL Siggens, N Sihra, I Silva, A Simioni, LFC Simmonds, DJ Simpson, A Singh, S Singh, T Singhal, P Sivaloganathan, K Sloan, N Smallcombe, CJ Smart, Neil J Smart, R Smith, H Smoker, L Solinas, JEH Souter, EL Springate, GF Stephens, R Stevenson, DJ Stewart, I Stoica, E Strachan, BM Stubbs, W Stupalkowska, A Suliman, A Sultana, H Sunter, S Suriyakumar, NRA Symons, K Szentpali, A Szucs, V Tabain, LE Tague, K Tailor, CY Tan, S Tan, AM Tang, M Tarazi, YH Tay, S Tayeh, M Taylor, NS Taylor, D Taze, E Teasdale, N Thakral, B Thava, N Thavanesan, AJ Thaventhiran, K Theodoropoulou, AT Thomas, L Thomas, DB Thompson, R Thompson, SN Thoukididou, SG Tiboni, LA Tiedt, N Ting, BJ Tinsley, JM Tognarelli, J Torkington, A Torrance, DC Townsend, PJ Tozer, M Trail, F Trew, V Tudyka, L Tullie, A Turnbull, EJ Turner, CS Twum-Barima, Robert Tyler, S Vakis, A La Valle, GI Van Boxel, J Vance-Daniel, M Varcada, N Varma, EM Vaughan, VR Velchuru, R Velho, AK Venkatasubramaniam, ML Venn, V Vijay, Z Vinnicombe, P Vitish-Sharma, S Wagener, K Waite, KJ Walters, U Walters, BG Wardle, SD Wardle, J Warusavitarne, J Watfah, N Watson, J Wauchope, LW Weatherburn, CR Weegenaar, S Welsh, S Wheatstone, HE Whewell, P Whitehouse, E Whiteman, L Whittaker, K Wijesundera, D Wilkinson, GL Williams, M Williams, R Williams, S Williams, EJ Wilson, MSJ Wilson, DC Winter, G Winter, J Wolff, A Wong, CLL Wong, SY Wong, CS Wood, C Woodrow, A Woodward, B Woodward, E Wright, HL Wright, F Wu, S Yalamarthi, P Yang, E Yardimci, T Yasin, SK Yen, S Yoganathan, S Yoong, H Youssef, LPS Yow, A Zaborowski, AZ Zadi, ZA Zarka, MA Zarog, AY Zhang, Nepogodiev, D., Wilkin, R. J., Bradshaw, C. J., Skerritt, C., Ball, A., Moni-Nwinia, W., Blanco-Colino, R., Chauhan, P., Drake, T. M., Frasson, M., Gee, O., Glasbey, J. C., Matthews, J. H., Morley, G. L., Naumann, D. N., Pata, F., Soares, A. S., Bhangu, A., Abbas, S. H., Abdelgadir, A. M., Abdelrahman, A., Abdelrahman, M., Abdelwahed, A., Abou El Ella, Y., Abulafi, M., Acharya, A., Adam, M. E., Adams, R. E., Adegbola, S. O., Adimonye, A., Adnan, M., Afshar, S., Ahad, A., Ahel, J., Ahern, D. P., Ahmad Asmadi, A., Ahmed, B., Ahmed, G., Ahmed, O. S., Ahmed, S., Akbari, K., Akinsola, O., Al-Khyatt, W., Al-Sarireh, B., Al-Sheikh, M., Alani, M., Alexander, R., Alhammali, T., Ali, M., Aljorfi, A., Allen, M., Allington, J., Alshafei, A., Amarasinghe, R., Amayo, A., Amin, V., Amuthalingam, T., Anandan, L., Anderson, O., Andreani, S. M., Andrews, B., Ang, A., Aravind, B., Archer, J. E., Aremu, M. A., Arunachalam, S., Aruparayil, N., Ashmore, D. L., Ashour, O., Ashraf, N., Assaf, N., Avalapati, H., Awokoya, O. O., Ayube-Brown, J., Badenoch, T., Bagga, R., Baginski, A., Bailey, S., Bailey, S. T. R., Baird, C., Baker, B., Balai, E. J., Balasubramaniam, A., Bandyopadhyay, S. K., Banks, A., Bansal, H., Barnieh, W., Barrie, A., Barter, C. A., Bastianpillai, J., Beasley, W. D., Bell, C. R., Bell, J., Beral, D., Berry, B. J. M., Bevan, K. E., Bevan, V., Bhanderi, S., Bhargava, A., Bilku, D., Birindelli, A., Blackford, O. D., Blackwell, J. E. M., Blake, L., Blencowe, N. S., Boam, T. D., Boereboom, C., Bogdan, M., Bohra, P., Bolger, J. C., Bolton, W., Bond, S., Borg, C. M., Borghol, K., Boshier, P. R., Bouhadiba, N., Bowen, J., Bowerman, H., Bowman, C. R., Boyd-Carson, H., Branagan, G., Brennan, P., Brett, M., Brewer, H. K., Brewer, H., Bronder, C., Brown, A., Brown, A. G., Brown, C. E., Brown, M., Brown, R., Buckley-Jones, S., Budzanowski, A., Bukhari, W., Bull, C., Bullivant, J. K., Burns, K. M., Burnside, D., Busuttil, A., Byrne, B. E., Byrnes, C. K., Caldwell, M., Callan, R., Cameron, F. C., Campbell, U., Campbell, U. M., Campbell, W., Carden, C. A., Carder, C. F. W., Carney, K., Cartwright, H., Cay, P., Chalk, A., Chambers, B., Champsi, A., Chan, D., Chan, T. C. W., Chandler, S. B., Chapman, J., Charalabopoulos, A., Chasty, B., Chatzikonstantinou, M., Cheah, W. L., Chean, C. S., Cheng, S., Cheng, S. A., Cheruvu, M., Chin, M. Y., Chishti, I. A., Choi, S., Chok, S. M., Chong, B., Choong, J. H., Chowdhary, M., Chowdhury, F., Choy, C. H., Christian, L., Christopoulos, P., Chui, K., Cipparrone, M., Clark, G. L., Clarke, S. A., Cleeve, S. J., Clement, K. D., Clements, B., Clements, C., Clements, J. D., Clements, J. M., Clements, J. S., Clements, J. A., Clingan, R., Cloney, L., Clough, E. C. S., Coe, P. O., Collier-Wakefield, O., Colliver, D. W., Colvin, D. A., Connelly, T. M., Connor, M. J., Cook, V., Cooke, F., Cooper, F., Cotton, A. E., Couch, D. G., Cousins, L., Coyle, D., Creasy, W., Cresner, R. L., Crone, A., Cross, K., Crozier, J., Cunha, P., Curtis, N. J., D'Souza, N., Dagash, H., Dalmia, S., Daniels, I., Danquah-Boateng, D., Dar, F. A., Dart, K., Das, A., Daureeawoo, R., Davidson, S., Davidson, J. R., Davies, P. L., Davis, S., Daya Shetty, V., De-Manzoni-Garberini, A., De-Marchi, J. A., Dean, E. A., Dean, S., Delimpalta, C., Denley, S., Dennison, G., Devine, A. A., Dharamavaram, S., Dhari, A. A., Di Franco, F., Di Saverio, S., Dobson, C., Docherty, J. A., Doherty, C., Donaldson, G., Donohoe, N. O., Donohoe, O., Douka, E., Doulias, T., Downey, M., Doyle, C., Drye, N., Du, D. T., Dudek, J. G., Dunning, P. G., Dyal, A. R. S., Eardley, N. J., Earnshaw, L., Easdon, S., Edwards, S. E., Egan, R. J., El-Masry, S., El-Tayar, O., Elbourne, C. R., Elgaddal, S., Elseedawy, M., Elshaer, M., Elsharnoby, O. H., Elzeneini, W. M. A., Emslie, K. M., Engall, N. F. T., Ertansel, B., Esmail, H. D., Ettles, C., Evans, J., Evans, J. D., Everden, A., Fadel, M., Fahmy, S. E., Fairfield, C. J., Fanibi, B. F., Farina, V., Farrell, S. M., Farrow, E. Z., Fasuyi, J. A., Faulkner, G., Fawkner-Corbett, D., Fawzi, F., Fehervari, M., Ferguson, N., Finch, J. G., Finlayson, H., Flack, T., Foers, W., Foley, N. M., Ford, K., Forgie, A., Foster, A., Foster, J. D., Fox, A. M. W., Francis, N., Franklin, D., Froud, H., Fuller, H. L., Gaines, E., Galea, J., Gammeri, E., Garnham, J., Garvin, J., Gates, Z., Gentry, R., Ghaffari, I., Ghatorae, S., Gidwani, A. L., Gilbert, T. G., Gilbert, T. M., Gill, S., Gillespie, M., Gillick, J., Giorga, A., Gopalakrishnan, K., Gopalswamy, S., Gopinath, S., Gormely, R., Govind, G., Grant, C., Graveston, J., Gray, J., Gray, R. T., Griffith, D., Griffith, J. P., Griffiths, E. A., Griffiths, S. N., Griggs, E. J., Grosvenor, S., Grove, T., Gulamhussein, M., Guliani, J., Gummaraju, A., Gunning, S., Gurjar, S. V., Guru-Naidu, S., Gurung, S., Habib, H., Hackney, L., Haddow, J. B., Hajibandeh, S., Halkias, C., Hall, N. J., Hamelmann, R. N., Haneef, M., Haneef, M. S., Hanif, Z., Hanley, C., Hann, A. J., Hanna, T., Hardy, E., Harlinska, A., Harper, F., Harries, R. L., Harris, A., Harris, G., Harris, M. P., Hasan, R., Hassane, A., Hatt, J. R., Haveliwala, Z., Hawkins, W., Hayat, Z., Hayes, C., Hebbar, K. R. M., Henderson, L., Henderson, L. T., Herrod, P. J. J., Hever, P., Hickey, L. M., Hicks, G., Hodgson, J. M., Hoff, M., Hollingsworth, A., Hook, A., Hornby, S. T., Horsfield, E., Howie, E. E., Huang, L., Hudson-Peacock, N. J., Hughes, D. L., Hureibi, K. A., Hussain, A., Hussain, N., Hussaini, S. A., Hussein, A., Hutchinson, B., Ibrahim, Y. M. S., Ikram, S., Ilozue, T., Iosif, E., Iqbal, M. R., Irukulla, S., Irwin, R., Islam, N., Ivey, P., Jackson, C. R., Jackson, A., Jah, S. M. H., Jain, A., Jain, S., Jama, G. M., Jamieson, N. B., Janardanan, S., Jasinski, B., Jenner, D., Jerome, E., Johnson, B., Johnstone, A., Jokhan, S., Jones, A., Jones, C. E., Jones, C. S., Jones, E., Jones, L., Kabir, U., Kabwama, S., Kamal, M., Kamande, I. W., Kanakala, V., Kannegieser-Bailey, M., Kaptanis, S., Karim, M. J., Karwal, R. S., Kaur, G., Keegan, R., Kelay, A., Kennedy, N. D., Kent, D. A., Khair, A., Khan, K., Khan, S., Khasria, A., Kho, H., Kilkenny, J., King, R., Kinross, J., Kirkham, E. N., Knight, B., Kochupapy, R., Koh, C., Kouli, O., Krishnamoorthy, A., Krivan, S., Kumar, K., Kumar, S., Kung, V. W. S., Kuo, R., Lafaurie, G., Lai, C. W., Lal, N., Lawday, S., Layman, S., Layton, G. R., Lazzaro, A., Lecky-Thompson, L., Lee, K. A., Lee, K. J., Lee, M., Lee, S. L., Leighton, P. A., Leitch, R. P., Lennox-Warburton, H. C., Leung, E. L., Li, C. H., Lim, J. M., Limb, C., Ljungqvist, G., Lloyd, G., Lodhia, S., Logan, P. C., Long, M., Long, P., Long, R. H., Longshaw, A., Louw, C., Lund, J. N., Ly, C., Lynch Wong, M. J., Ma, J. K. Y., Macdonald, A., Macinnes, E. G. E., Magro, T., Mahapatra, R., Mahendran, B., Mahmood, F., Mahmoud, A., Mahon, D., Mai, D., Maina, A., Major, C. P., Makhija, R., Malam, Y., Malik, A., Malik, K., Malik, S. N., Manda, V. M., Manektella, K. M., Mann, C., Manoharan, P., Manson, R., Mansoor, S., Mansour, M. M., Mansour, S., Maqboul, F., Maragouthakis, D., Marangoni, G., Mardhiah, S., Maripi, H., Marriott, P., Marsh, L., Marshall, G., Martin, A., Martin, L. M., Martinou, E., Mashar, R., Mason, J., Masood, M., Mathew, G., Maude, K., Mazumdar, E., Mc-Dermott, A., Mcarthur, D., Mccain, R. S., Mccain, S., Mccann, C., Mccaughey, P., Mccluney, S. J., Mccullough, J., Mcdonnell, D., Mcdowall, N. A., Mcentee, J. E., Mcglynn, K., Mcgrath, D., Mcgucken, O., Mcilwaine, S., Mcilwrath, A. C., Mckay, S. C., Mckelvie, M. A., Mckenna, M., Mckeon, J., Mckevitt, K. L., Mckinley, N. C., Mclaughlin, D., Mcmahon, S. V., Mcmorran, D., Mcnally, L., Mcquaid, M., Mcwhirter, D. M., Mealy, K., Mears, A., Menzies, D., Merai, H., Mersh, R. J., Miguras, M., Milgrom, D., Miller, K., Milward, J., Mirza, S., Misky, A. T., Mistry, D., Mitchard, M. J., Mitru, R. M., Mohamed, I. M., Mohamed, I., Mohamed, T. M., Mohamed, W. O., Mohd, N., Moore, C., Moradzadeh, J., Morrison, T. E. M., Morrison-Jones, V., Morton, D. G., Mothe, B. S., Motiwala, F., Motter, D., Mowbray, N. G., Mughal, Z., Mulsow, J., Mundkur, N., Muntean, A., Murphy, C., Murphy, R., Murray, M. P., Muzaffar, M., Myatt, A., Nadeem, A., Nagarajan, D., Nagendram, S., Nair, A., Nair, M. K., Nair, M. S., Naismith, K. N., Nambiar, K., Nana, G. R., Nash, Z., Nastro, P., Nazarian, S., Neagle, G., Neale, A., Neary, P. M., Newton, R. C., Ng, M., Ng, S., Niaz, O., Nickson, S., Nicol, D., Nimako, E., Noor Mohamed, M. S., Nyeko-Lacek, M., O'Connor, B. R., O'Neill, E., O'Neill, N., O'Sullivan, D., O'Brien, J., Oakey, M., Obeid, N., Odeh, A., Ogboru, S., Ogbuokiri, C., Okekunle, B., Okorocha, E., Olagbaiye, O., Olivier, J. B., Ooi, R., Orawiec, P., Orizu, M., Orme, N., Ormiston, R., Paget, C., Pal, A., Palani-Velu, L. K., Pan, Y., Panda, N., Pandey, V., Pandya, R., Pandya, D., Paramasevon, K. R., Pardy, C., Parkola, M. J., Pasquali, S., Patel, A. S., Patel, B. Y., Patel, C., Patel, H., Patel, N., Patel, R. T., Patel, S., Patel, Y., Patel, M. M., Patil, S. D., Payne, C. J., Payne, R. E., Pearce, J. C. H., Pearce, L., Pedder, A., Peirce, C. B., Peiris, G. B., Peleki, A., Pellino, G., Pento, V., Peprah, D., Perera, H. S., Perera, M. I., Phelan, L., Photiou, D., Pierre, R., Pilkington, J. P., Pinkney, T. D., Pisavadia, B., Poacher, A., Podda, M., Pollard, H., Popova, D., Poudevigne, M., Prideaux, A., Pullabatla Venkata, U. P., Quddus, A., Quill, S., Rabie, M., Rabie, M. R., Radwan, R. W., Rae, J. F., Rahim, A., Rahmani, L. S., Rajagopal, S., Rajaram, R., Rajaretnam, N., Rajjoub, Y., Rallage, H., Ramcharan, S., Ranathunga, S., Rao, M., Rao, V. S. R., Raofi, A., Rashid, M., Rate, A., Ravindran, R., Raymond, M., Raza, S. S., Reddy, A., Redman, E. P., Redmond, A. E., Rekhraj, S., Renshaw, S., Rex, D., Rezacova, M., Rezvani, S., Ribeiro, B., Rich, J. E., Richardson, T. D., Rigby, S., Rigney, B., Rinkoff, S., Robb, H. D., Robertson, C., Robinson, D., Robinson, A., Rodger, V., Rolph, R., Roomi, S., Roth, N. P. G., Rothnie, K., Roy, C., Rupani, S., Rutherford, D. G., Sacks, R., Saghir, N., Saha, A., Sahay, S. J., Sahnan, K., Salama, Y., Salim, S., Samuel, M., Sana, S., Sandu, L., Sarmah, P., Sarveswaran, J., Saunders, S. M. F., Savill, A., Savioli, F., Schuster Bruce, J. R., Sebastian, J. F., Seddon, T. C., Seneviratne, N., Seth, M., Setshwaelo, T., Sezen, E., Sgardelis, P., Sgro, A., Shah, C., Shah, J., Shah, K., Shah, S. M., Shakoor, Z., Shalaby, M. S., Shanmuganathan, V., Shanmugarajah, K., Sharma, A., Sharma, P., Sharp, O. L., Shepherd, J. A., Sherif, M. A., Shet, S., Shingler, G., Shiwani, M. H., Shreshta, D., Sian, T., Siddiqui, M. N., Siddiqui, Z. A., Siggens, K. L., Sihra, N., Silva, I., Simioni, A., Simmonds, L. F. C., Simpson, D. J., Singh, A., Singh, S., Singhal, T., Sivaloganathan, P., Sloan, K., Smallcombe, N., Smart, C. J., Smart, N. J., Smith, R., Smoker, H., Solinas, L., Souter, J. E. H., Springate, E. L., Stephens, G. F., Stevenson, R., Stewart, D. J., Stoica, I., Strachan, E., Stubbs, B. M., Stupalkowska, W., Suliman, A., Sultana, A., Sunter, H., Suriyakumar, S., Symons, N. R. A., Szentpali, K., Szucs, A., Tabain, V., Tague, L. E., Tailor, K., Tan, C. Y., Tan, S., Tang, A. M., Tarazi, M., Tay, Y. H., Tayeh, S., Taylor, M., Taylor, N. S., Taze, D., Teasdale, E., Thakral, N., Thava, B., Thavanesan, N., Thaventhiran, A. J., Theodoropoulou, K., Thomas, A. T., Thomas, L., Thompson, D. B., Thompson, R., Thoukididou, S. N., Tiboni, S. G., Tiedt, L. A., Ting, N., Tinsley, B. J., Tognarelli, J. M., Torkington, J., Torrance, A., Townsend, D. C., Tozer, P. J., Trail, M., Trew, F., Tudyka, V., Tullie, L., Turnbull, A., Turner, E. J., Twum-Barima, C. S., Tyler, R., Vakis, S., Valle, A. L., Van Boxel, G. I., Vance-Daniel, J., Varcada, M., Varma, N., Vaughan, E. M., Velchuru, V. R., Velho, R., Venkatasubramaniam, A. K., Venn, M. L., Vijay, V., Vinnicombe, Z., Vitish-Sharma, P., Wagener, S., Waite, K., Walters, K. J., Walters, U., Wardle, B. G., Wardle, S. D., Warusavitarne, J., Watfah, J., Watson, N., Wauchope, J., Weatherburn, L. W., Weegenaar, C. R., Welsh, S., Wheatstone, S., Whewell, H. E., Whitehouse, P., Whiteman, E., Whittaker, L., Wijesundera, K., Wilkinson, D., Williams, G. L., Williams, M., Williams, R., Williams, S., Wilson, E. J., Wilson, M. S. J., Winter, D. C., Winter, G., Wolff, J., Wong, A., Wong, C. L. L., Wong, S. Y., Wood, C. S., Woodrow, C., Woodward, A., Woodward, B., Wright, E., Wright, H. L., Wu, F., Yalamarthi, S., Yang, P., Yardimci, E., Yasin, T., Yen, S. K., Yoganathan, S., Yoong, S., Youssef, H., Yow, L. P. S., Zaborowski, A., Zadi, A. Z., Zarka, Z. A., Zarog, M. A., and Zhang, A. Y.
- Subjects
Male ,Pediatrics ,medicine.medical_specialty ,Validation study ,Adolescent ,Ultrasound scan ,Pain ,Risk prediction models ,Risk Assessment ,Sensitivity and Specificity ,Cohort Studies ,Ilium ,03 medical and health sciences ,0302 clinical medicine ,Predictive Value of Tests ,030225 pediatrics ,Developmental and Educational Psychology ,medicine ,Appendectomy ,Humans ,Prospective Studies ,030212 general & internal medicine ,Surgical emergency ,Child ,Ultrasonography ,business.industry ,Area under the curve ,Appendicitis ,medicine.disease ,United Kingdom ,Child, Preschool ,Acute Disease ,Pediatrics, Perinatology and Child Health ,Female ,Right iliac fossa pain ,business ,Ireland ,Cohort study - Abstract
BACKGROUND: Acute appendicitis is the most common surgical emergency in children. Differentiation of acute appendicitis from conditions that do not require operative management can be challenging in children. This study aimed to identify the optimum risk prediction model to stratify acute appendicitis risk in children. METHODS: We did a rapid review to identify acute appendicitis risk prediction models. A prospective, multicentre cohort study was then done to evaluate performance of these models. Children (aged 5-15 years) presenting with acute right iliac fossa pain in the UK and Ireland were included. For each model, score cutoff thresholds were systematically varied to identify the best achievable specificity while maintaining a failure rate (ie, proportion of patients identified as low risk who had acute appendicitis) less than 5%. The normal appendicectomy rate was the proportion of resected appendixes found to be normal on histopathological examination. FINDINGS:15 risk prediction models were identified that could be assessed. The cohort study enrolled 1827 children from 139 centres, of whom 630 (34·5%) underwent appendicectomy. The normal appendicectomy rate was 15·9% (100 of 630 patients). The Shera score was the best performing model, with an area under the curve of 0·84 (95% CI 0·82-0·86). Applying score cutoffs of 3 points or lower for children aged 5-10 years and girls aged 11-15 years, and 2 points or lower for boys aged 11-15 years, the failure rate was 3·3% (95% CI 2·0-5·2; 18 of 539 patients), specificity was 44·3% (95% CI 41·4-47·2; 521 of 1176), and positive predictive value was 41·4% (38·5-44·4; 463 of 1118). Positive predictive value for the Shera score with a cutoff of 6 points or lower (72·6%, 67·4-77·4) was similar to that of ultrasound scan (75·0%, 65·3-83·1). INTERPRETATION: The Shera score has the potential to identify a large group of children at low risk of acute appendicitis who could be considered for early discharge. Risk scoring does not identify children who should proceed directly to surgery. Medium-risk and high-risk children should undergo routine preoperative ultrasound imaging by operators trained to assess for acute appendicitis, and MRI or low-dose CT if uncertainty remains. FUNDING: None.
- Published
- 2021
34. The myotubular and centronuclear myopathy patient registry: a multifunctional tool for translational research.
- Author
-
Bullivant J, Sen A, Page J, Graham RJ, Jungbluth H, Schara-Schmidt U, Lynch O, Bönnemann C, Hollander AD, Lennox A, Moat D, Saegert C, Amburgey K, Buj-Bello A, Dowling JJ, and Marini-Bettolo C
- Subjects
- Humans, Translational Research, Biomedical, Dynamin II genetics, Genotype, Muscle, Skeletal, Myopathies, Structural, Congenital genetics, Myopathies, Structural, Congenital therapy
- Abstract
The Myotubular and Centronuclear Myopathy Registry is an international research database containing key longitudinal data on a diverse and growing cohort of individuals affected by this group of rare and ultra-rare neuromuscular conditions. It can inform and support all areas of translational research including epidemiological and natural history studies, clinical trial feasibility planning, recruitment for clinical trials or other research studies, stand-alone clinical studies, standards of care development, and provision of real-world evidence data. For ten years, it has also served as a valuable communications tool and provided a link between the scientific and patient communities. With the anticipated advent of disease-modifying therapies for these conditions, the registry is a key resource for the generation of post-authorisation data for regulatory decision-making, real world evidence, and patient-reported outcome measures. In this paper we present some key data from the current 444 registered individuals with the following genotype split: MTM1 n=270, DNM2 n=42, BIN1 n=4, TTN n=4, RYR1 n=12, other n=4, unknown n=108. The data presented are consistent with the current literature and the common understanding of a strong genotype/phenotype correlations in CNM, most notably the data supports the current knowledge that XLMTM is typically the most severe form of CNM. Additionally, we outline the ways in which the registry supports research, and, more generally, the importance of continuous investment and development to maintain the relevance of registries for all stakeholders. Further information on the registry and contact details are available on the registry website at www.mtmcnmregistry.org., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023. Published by Elsevier B.V.)
- Published
- 2024
- Full Text
- View/download PDF
35. Facioscapulohumeral Muscular Dystrophy European Patient Survey: Assessing Patient Reported Disease Burden and Preferences in Clinical Trial Participation.
- Author
-
McNiff MM, Hawkins S, Haase B, Bullivant J, McIver T, Mitelman O, Emery N, Tasca G, Voermans N, and Diaz-Manera J
- Subjects
- Humans, Travel, Travel-Related Illness, Cost of Illness, Muscle Weakness, Patient Reported Outcome Measures, Muscular Dystrophy, Facioscapulohumeral therapy
- Abstract
Background: Facioscapulohumeral muscular dystrophy (FSHD) is a genetic disorder characterized by progressive muscle weakness leading to permanent disability. There are no curative treatments, however, there are several upcoming clinical trials testing new therapies in FSHD., Objective: This study aimed to explore the disease burden and patient preferences of people with FSHD to ensure that clinical trials can be designed to include outcome measures that are relevant and important to patients., Methods: A survey was developed with a steering committee clinicians and physiotherapists with relevant experience in the disease, patient representatives, a registry expert and industry consultants. Themes of the survey included; participant demographics, disease progression and impact on function, factors encouraging or discouraging clinical trial participation, and positive outcomes of a clinical trial., Results: 1147 participants responded to the online survey, representing 26 countries across Europe and a range of disease severities. The study highlighted the key symptoms causing concern for FSHD patients - muscle weakness and mobility issues - reflecting what participants want targeted for future therapies. The need for clear information and communication throughout clinical trials was emphasised. Factors most encouraging trial participation included access to new investigational therapies, access to trial results and benefits for the FSHD community. Factors most discouraging trial participation included travel related issues and fear of side effects., Conclusions: The results from this study identify the patient reported burden of FSHD and should provide researchers and industry with areas of therapeutic research that would be meaningful to patients, as well as supporting the development of patient centric outcome measures in clinical trials.
- Published
- 2024
- Full Text
- View/download PDF
36. Equality and diversity in health governance systems: are we getting it right and are there lessons from COVID-19?
- Author
-
Marinova M, Sathyamoorthyr G, Singhal P, Bullivant J, and Bell D
- Subjects
- Ethnicity, Humans, Minority Groups, Pandemics, SARS-CoV-2, COVID-19
- Abstract
The COVID-19 pandemic highlighted major challenges in governance and inequalities particularly among those from Black, Asian and minority ethnic (BAME) groups. This paper focuses on the BAME community and explores this through a governance lens, with particular reference to the representation and functioning of boards involved in healthcare and building a transparent culture. To illustrate this, the paper utilises a series of structured reflective questions with model answers termed Right Question, Right Answer and links to the Centre for Quality in Governance (CQG) Maturity Matrix. This article highlights the need to improve diversity and accountability of health and care organisations to their staff and local population. For governance to be effective, it must be aligned and comply with healthcare system regulations to ensure improvement of legislative acts and standards. The paper aims to inform government policy by moving from rhetoric, or merely describing challenges, to action and change by increasing accountability., Competing Interests: This article presents independent research commissioned by the National Institute for Health Research (NIHR) under the Applied Health Research (ARC) programme for North West London. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
- Published
- 2021
- Full Text
- View/download PDF
37. Good management. Partnerships.
- Author
-
Stoten B, Bullivant J, and Deighan M
- Subjects
- Health Facility Administration, State Medicine, United Kingdom, Cooperative Behavior, Interinstitutional Relations
- Published
- 2008
38. Re-energising Clinical Governance through Integrated Governance.
- Author
-
Deighan M and Bullivant J
- Subjects
- Clinical Medicine standards, Delivery of Health Care, Integrated standards, Quality of Health Care, United Kingdom, Clinical Medicine organization & administration, Decision Making, Organizational, Delivery of Health Care, Integrated organization & administration
- Abstract
The purpose of this paper is to accurately identify the future governance arrangements the NHS will follow, a close examination of the roles of Directors in implementing such a policy, and the National Policy documents that are required to put this in place.
- Published
- 2006
- Full Text
- View/download PDF
39. Benchmarking in the UK National Health Service.
- Author
-
Bullivant JR
- Subjects
- Efficiency, Organizational, Hospitals, Public organization & administration, Planning Techniques, Process Assessment, Health Care, Software Design, State Medicine organization & administration, Systems Analysis, United Kingdom, Hospitals, Public standards, Quality Assurance, Health Care organization & administration, State Medicine standards
- Abstract
Traces the development of benchmarking in a number of UK National Health Service trusts, highlighting practical processes and the benefits of benchmarking but also identifying common pitfalls and ways of handling them when they arise or, better still, anticipating them. Several examples of successful benchmarking initiatives are given, emphasizing the advantages of using a systematic benchmarking approach, using benchmarking clubs and the need to develop ad hoc performance measures. Concludes by emphasizing the need for a new commitment to continuous improvement by senior managers to avoid the failures of previous drives for improvement.
- Published
- 1996
- Full Text
- View/download PDF
40. Best of the best.
- Author
-
Bullivant J and Naylor M
- Subjects
- Community Health Nursing standards, Hospitals, Teaching standards, Methods, Wales, Quality Assurance, Health Care, State Medicine standards
- Published
- 1992
Catalog
Discovery Service for Jio Institute Digital Library
For full access to our library's resources, please sign in.