PSP articles and publications
This section provides links to articles and publications relevant to individual PSPs.
Acne
Layton A, Eady EA, Peat M, Whitehouse H, Levell N, Ridd M, Cowdell F, Patel M, Andrews S, Oxnard C, Fenton M, Firkins L, Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership. BMJ Open, 17 July 2015, doi: 10.1136/bmjopen-2015-008085
Alcohol-related Liver Disease
ADAM (Alcohol Dependence and Adherence to Medicines) trial blog, January 2017
Simon Denegri's blog, Let's follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease, January 2017
Anaesthesia and Perioperative Care
Boney O, Bell M, Bell N, Conquest A, Cumbers M, Drake S, Galsworthy M, Gath J, Grocott M, Harris E, Howell S, Ingold A, Nathanson M, Pinkney T, Metcalf L, Identifying research priorities in anaesthesia and perioperative care: final report of the joint National Institute of Academic Anaesthesia/James Lind Alliance Research Priority Setting Partnership. BMJ Open, 16 December 2015, doi: 10.1136/bmjopen-2015-010006
Article about the PSP in July 2014 edition of Anaesthesia News
Asthma
Welsh E, Stovold E, Karner C, Cates C, Cochrane Airways Group reviews were prioritized for updating using a pragmatic approach. Journal of Clinical Epidemiology, volume 68, issue 3, March 2015, pages 341-346, doi: 10.1016/j.jclinepi.2014.11.002
Elwyn G, Crowe S, Fenton MA, Firkins L, Versnel J, Walker S, Cook I, Holgate S, Higgins B, Gelder C, Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions. Journal of Evaluation in Clinical Practice, volume 16, issue 3, pages 627-631, June 2010, doi: 10.1111/j.1365-2753.2009.01262.x
Petit-Zeman S, Turning the tables, The Guardian online, 21 May 2007
Cellulitis
Thomas KS, Brindle R, Chalmers JR, Gamble B, Francis NA, Hardy D, Hooper J, Keeley V, Levell NJ, McPhee M, Metcalf L, Santer M, Tarpey M, Smart P, Wallace A, Wilkes S, Identifying priority areas for research into the diagnosis, treatment and prevention of cellulitis (erysipelas): results of a James Lind Alliance Priority Setting Partnership. British Journal of Dermatology, 14 June 2017, doi: 10.1111/bjd.15634
Childhood Disability
Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, Janssens A, Stimson A, Coghill J, Robinson K, Fenton M, Cowan K, Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open, 28 January 2015, doi: 10.1136/bmjopen-2014-006233
Cleft Lip and Palate
Petit-Zeman S, Cowan K, Patients/carers and clinicians can set joint priorities for research in cleft lip and palate. International Journal of Pediatric Otorhinolaryngology, volume 77, issue 3, March 2013, pages 309-310. doi: 10.1016/j.ijporl.2012.11.035
Contraception
Blog from Brook, on involvement of young people in Contraception research priority setting, May 2017
Cystic Fibrosis
Blog from Janet Allen, Answering the big questions, February 2017
Dementia
Report from the Visual Impairment and Dementia (VIDem) summit, February 2015, which worked with questions previously identified by the JLA PSPs in Dementia and in Sight Loss and Vision. Report published March 2016.
Health and Social Care Research and Development (HSC R&D) Division, Evaluation of the Research Programme in Dementia Care, First Annual Report, November 2015
Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C, on behalf of the Dementia Priority Setting Partnership, Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda. Age and Ageing 2015; 44:985-993, doi: 10.1093/ageing/afv143
Depression
MQ blog on its work to identify research priorities in depression, March 2016
Diabetes (Type 1)
Snow R, Crocker JC, Crowe S, Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting. Research Involvement and Engagement 2015, 1:7, doi: 10.1186/s40900-015-0007-6
Gadsby R, Snow R, Daly AC, Crowe S, Matyka K, Hall B, Petrie J, Setting research priorities for Type 1 diabetes. Diabetic Medicine, volume 29, issue 10, pages 1321-1326, October 2012, doi: 10.1111/j.1464-5491.2012.03755.x
Eating Disorders (Netherlands)
Furth EF van, Meer A van der, Cowan K, Top 10 research priorities for eating disorders. The Lancet Psychiatry, volume 3, No 8, p706-707, August 2016. doi: 10.1016/S2215-0366(16)30147-X
Eczema
Batchelor JM, Ridd MJ, Clarke T, Ahmed A, Cox M, Crowe S, Howard M, Lawton S, McPhee M, Rani A, Ravenscroft JC, Roberts A, Thomas KS, The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritise important research questions for the treatment of eczema. British Journal of Dermatology, volume 168, issue 3, pages 577-582, March 2013, doi: 10.1111/bjd.12040
Emergency Medicine
Smith J, Professor Jason Smith introduces PEN to the James Lind Alliance Emergency Medicine Priority Setting Partnership, Pan European Networks: Health, May 2017.
Smith J, Keating L, Flowerdew L, O'Brien R, McIntyre S, Morley R, Carley S, on behalf of the PSP Steering Group, An Emergency Medicine Research Priority Setting Partnership to establish the top 10 research priorities in emergency medicine. Emergency Medicine Journal, 4 May 2017,
Blog about the PSP, January 2017, including podcast. http://stemlynsblog.org/heres-the-top-10-and-more-research-priorities-in-em-james-lind-st-emlyns/
Setting research priorities in emergency care. Nursing times.net, online 25 January 2016.
Cochrane news item, January 2016. Emergency Medicine Research Priority Setting Partnership
Blog, December 2015. Nurses' opinions matter and they should be heard: How you can help influence research. Nursing Times.net
Blog about the PSP, October 2015. http://stemlynsblog.org/james-lind-and-the-rcem-needs-you-and-you-and-you-st-emlyns/
Smith JE, Morley R, The emergency medicine research priority setting partnership. Emergency Medicine Journal, online 29 September 2015, doi: 10.1136/emermed-2015-205353
Blog, August 2015. ‘Patient and Public Involvement: Resource for Researchers'. NIHR CLAHRC Yorkshire and Humber.
Endometriosis
Downey A, Feel our pain: Endometriosis sufferers call for better support, faster diagnosis and more effective treatment for the agonising condition, The Sun, 19 May 2017
Women call for more studies to understand causes, find potential cure for endometriosis, News Medical Life Sciences, 19 May 2017.
Mayor S, Research News: Endometriosis research should aim to improve diagnosis and halt progression, meeting hears, BMJ, 2017;357:j2438, doi:10.1136/bmj.j2438
Horne AW, Saunders PTK, Abokhrais IM, Hogg L, on behalf of the Endometriosis Priority Setting Partnership Steering Group, Top ten endometriosis research priorities in the UK and Ireland, The Lancet, 18 May 2017, doi: 10.1016/S0140-6736(17)31344-2
Blog, April 2017. Fair Treatment for the Women of Wales contributes to the Endometriosis Priority Setting Workshop
Hidradenitis Suppurativa
Ingram JR, Abbott R, Ghazavi M, Alexandroff AB, McPhee M, Burton T, Clarke T, The Hidradenitis Suppurativa Priority Setting Partnership. The British Journal of Dermatology, volume 171, issue 6, pages 1422-1427, December 2014, doi: 10.1111/bjd.13163
Hip and Knee Replacement for Osteoarthritis
Crowe S, Regan S, Gathering treatment uncertainties from patients/carers using different methods: evaluation report for Oxford Biomedical Research Centre (pdf, 1044.38 KB), July 2014
Intensive Care
Reay H, Arulkumaran N, Brett SJ, Priorities for Future Intensive Care Research in the UK: Results of a James Lind Alliance Priority Setting Partnership. Journal of the Intensive Care Society, October 2014, volume 15, number 4 288-296, doi: 10.1177/175114371401500405
Brett S, Reay H, The James Lind Alliance Intensive Care Research Priority Setting Partnership: why another research prioritisation exercise?! Journal of the Intensive Care Society, July 2014, volume 14, number 3, 204, doi: 10.1177/175114371301400305
Kidney Cancer (Canada)
Jones JM, Bhatt J, Avery J, Laupacis A, Cowan K, Basappa NS, Basiuk J, Canil C, Al-Asaaed S, Heng DYC, Wood L, Stacey D, Kollmannsberger C, Jewett MAS, Setting Research Priorities for Kidney Cancer, European Urology, May 8 2017, doi: 10.1016/j.eururo.2017.04.011
Kidney Transplant
Knight SR, Metcalfe L, O'Donoghue K, Ball ST, Beale A, Beale W, Hilton R, Hodkinson K, Lipkin G, Loud F, Marson LP, Morris PJ, Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership. PLOS one, October 24 2016, doi:10.1371/journal.pone.0162136
Miscarriage
Miscarriage researcher makes plea for women's help, Mailonline, 20 November 2015
Mild to Moderate Hearing Loss
Henshaw H, Sharkey L, Crowe D, Ferguson M, Research priorities for mild-to-moderate hearing loss in adults, The Lancet, volume 386, no. 10009, p2140-2141, 28 November 2015, doi: 10.1016/S0140-6736(15)01048-X
Chapman S, Top 10 priorities for research on mild-moderate hearing loss, Evidently Cochrane, September 2015
Mesothelioma
Stephens RJ, Whiting C, Cowan K on behalf of the JLA Mesothelioma PSP steering group, Research Priorities in Mesothelioma: A James Lind Alliance Priority Setting Partnership. Lung Cancer, online 4 June 2015,doi: 10.1016/j.lungcan.2015.05.021Multiple Sclerosis
Finding the top 10 research priorities (pdf, 2707.27 KB). Research Matters, January/February 2014. Reproduced with kind permission of the Multiple Sclerosis Society
Neuro-oncology
Wagstaff A, Welcome to the revolution! The changing role of patient advocates within research. Cancer World, issue 66, May-June 2015, page 24
MacDonald L, UK patients and healthcare professionals work together to put brain and spinal cord tumours at the top of the clinical research agenda, Brain Tumour Magazine: World Edition 2015, page 41/42
Palliative and end of life care
Todd-Fordham F, Candy B, McMillan S, Best S, Does current UK research address priorities in palliative and end-of-life-care? European Journal of Palliative Care, 2016, 23(6)
Nelson A, Beyond the questions - thematic analysis of the first survey of the Palliative and end of life care PSP, October 2016
Read about the work of the Greater Manchester CLAHRC in 2016 to identify which of the Palliative and end of life care PSP priorities were of key interest locally. Blog, including their learning points.
All Ireland Institute of Hospice and Palliative Care launches the Top 10 Palliative Care Research Priorities for the island of Ireland
Top ten priority areas for palliative care research in Ireland launched by All Ireland Institute of Hospice and Palliative Care, ehospice, 10 June 2015
Smith R, Best S, Noble B, Identifying palliative and end-of-life care research priorities: a UK approach to consult end users. European Journal of Palliative Care, 22: 114-117 (2015)
Smith R, Best S, Tate T, Noble B, Tuft J, Tracey N, Eley J, McCullugh A, Black J, Stockton N, Cheesley A, Berry L, Burton C, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Maeso B, Chapman D, McIlfatrick S, Nelson A, Sivell S, Baillie J, VanGodwin J, Candy B, Cowan K, Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians,European Association of Palliative Care World Congress, Copenhagen, Denmark, 8-10 May 2015
Best S, Tate T, Noble B, Smith R, Tuft J, Tracey N, McCullugh A, Eley J, Black J, Stockton M, Cheesley A, Berry L, Burton C, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Maeso B, Chapman D, McIlfatrick S, Nelson A, Sivell S, Baillie J, VanGodwin J, Candy B, Beaumont N, Cowan K, Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians, BMJ Supportive & Palliative Care 5:1 (2015); doi:10.1136/bmjspcare-2014-000838.3;
Best S, Tate T, Noble B, Eley J, Black J, Stockton M, Cheesley A, Berry L, Loftus R, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Fryett S, Kerr A, McIlfatrick S, Nelson A, Candy B, Cowan K, The Palliative and end of life care Priority Setting Partnership (PeolcPSP): determining evidence uncertainties from the perspective of the end user of research, BMJ Supportive & Palliative Care 4, A42 (2014) doi:10.1136/bmjspcare-2014-000654.117;
Parkinson's
Deane KHO, Flaherty H, Daley D, Pascoe R, Penhale B, Clarke CE, Sackley C, Storey S, Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's disease. BMJ Open, 14 December 2014, doi: 10.1136/bmjopen-2014-006434
Patient Safety in Primary Care
Blog, December 2016. What are patient and clinician priorities for research in primary care patient safety? Rebecca Morris, Greater Manchester Primary Care Patient Safety Translational Research Centre
Blog, February 2016. Welcome to the Revolution. Richard Morley, James Lind Alliance Adviser working with the Patient Safety PSP
Pressure Ulcers
Cullum N, Buckley H, Dumville J, Hall J, Lamb K, Madden M, Morley R, O'Meara S, Saramago Goncalves P, Soares M, Stubbs N, Wounds research for patient benefit: a 5-year programme of research. NIHR Journals Library, August 2016, doi: 10.3310/pgfar-04130
Madden M, Morley R, Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership, Research Involvement and Engagement, 2 April 2016 2:12, doi: 10.1186/s40900-016-0026-y
Madden M, Providing patient centred pressure ulcer care. Nursing in Practice, 85, 3 August 2015
Ford S, List of 12 priorities for pressure ulcer study identified by UK researchers. Nursing Times.net, 8 May 2013
Madden M, Alienating evidence based medicine vs. innovative medical device marketing: A report on the evidence debate at a Wounds Conference. Social Science and Medicine, 2012, 72 (12) pp. 2046-2052
Madden M, My turn and my right. The Lancet, volume 380, number 9858, page 1992-1993, 8 December 2012, doi: 10.1016/S0140-6736(12)62154-0
JLA Pressure Ulcer Partnership, Partnership gives a voice to pressure ulcer patients. The Yorkshire Times online, 5th February 2012
Lamb K, Stubbs N, Dumville J, Cullum N, O'Meara S, Wounds Research for Patient Benefit: A five year programme of research in wound care. European Wound Management Association Journal, volume 11, number 2, page 43-46, May 2011
Preterm Birth
Duley L, Uhm S, Oliver S, on behalf of the Preterm Birth Priority Setting Partnership Steering Group, Top 15 UK research priorities for preterm birth. The Lancet, volume 383, No. 9934, p2041-2042, 14 June 2014, doi: 10.1016/S0140-6736(14)60989-2
Uhm S, Alderdice F, Brady I, Chambers B, Chivers Z, Crowe S, David AL, Deshpande S, Gale C, Gyte G, James CP, Duley L, McNeill J, Shennan A, Turner MA, Oliver S, Setting Preterm Birth Research Priorities With Multiple Professions and Service Users in the UK. Archives of Disease in Childhood, volume 99, issue suppl2, doi:10.1136/archdischild-2014-307384.349
Petit-Zeman S, Uhm S, Identifying research priorities in preterm birth. Infant, volume 8, issue 3, 2012
Prostate Cancer
Tyndale-Biscoe S, Malcolm E, Gnanapragasam VJ, Setting priorities for prostate cancer research. Trends in Urology & Men's Health, volume 3, issue 2, page 31-33, March/April 2012
Lophatananon A, Tynedale Biscoe S, Malcolm, S, Rippon HJ, Holmes K, Firkins LA, Fenton M, Crowe S, Stewart-Brown S, Gnanapragasam VJ, Muir KR, The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation. British Journal of Urology International, volume 108, issue 7, pages 1040-1043, October 2011, doi: 10.1111/j.1464-410X.2011.10609.x
Halls E, Where are the clinicians when you need them, BMJ 2010; 340:c1845,
Schizophrenia
Lloyd K, White J, Chalmers I, Schizophrenia: Patients' research priorities get funded. Nature, 487, 432, 26 July 2012, doi: 10.1038/487432b
Lloyd K, White J, Democratizing clinical research. Nature, 474, 277-278, 16 June 2011, doi: 10.1038/474277a
Lloyd K, Rose D, Fenton M, Identifying uncertainties about the effects of treatments for schizophrenia. Journal of Mental Health, 2006, volume 15, number 3, pages 263-268, doi: 10.1080/09638230600731586
Sight Loss and Vision
Report from the Visual Impairment and Dementia (VIDem) summit, February 2015, which worked with questions previously identified by the JLA PSPs in Dementia and in Sight Loss and Vision. Report published March 2016.
Vision 2020 UK hosts seminar for funders of eye research, Fight for Sight, 1 October 2015
Rowe F, Wormald R, Cable R, Acton M, Bonstein K, Bowen M, Bronze C, Bunce C, Conroy D, Cowan K, Evans K, Fenton M, Giles H, Gordon I, Halfhide L, Harper R, Lightstone A, Votruba M, Waterman H, Zekite A, The Sight Loss and Vision Priority Setting Partnership (SLV-PSP): overview and results of the research prioritisation survey process. BMJ Open, 2014, doi: 10.1136/bmjopen-2014-004905
Spinal Cord Injury
van Middendorp JJ, Allison HC, Ahuja S, Bracher D, Dyson C, Fairbank J, Gall A, Glover A, Gray L, El Masri W, Uttridge A, Cowan K, Top ten research priorities for spinal cord injury: the methodology and results of a British priority setting partnership. Spinal Cordadvance online publication, 10 November 2015, doi: 10.1038/sc.2015.199
van Middendorp JJ, Allison H, Cowan K, Top ten research priorities for spinal cord injury. The Lancet Neurology, volume 13, number 12, p1167, December 2014, doi: 10.1016/S1474-4422(14)70253-4
Stillbirth
Heazell AEP, Whitworth MK, Whitcombe J, Glover SW, Bevan C, Brewin J, Calderwood C, Canter A, Jessop F, Johnson G, Martin I, Metcalf L, Research Priorities for Stillbirth: Process Overview and Results from the UK Stillbirth Priority Setting Partnership. Ultrasound in Obstetrics & Gynecology, September 2015, doi: 10.1002/uog.15738
Stroke
Pollock A, St George B, Fenton M, Crowe S, Firkins L, Development of a new model to engage patients and clinicians in setting research priorities. Journal of Health Services Research & Policy, January 2014, volume 19, no 1, 12-18, doi: 10.1177/1355819613500665
Pollock A, St George B, Fenton M, Firkins L, Top 10 research priorities relating to life after stroke - consensus from stroke survivors, caregivers, and health professionals. International Journal of Stroke, volume 9, issue 3, pages 313-320, April 2014, doi: 10.1111/j.1747-4949.2012.00942.x
Pollock A, St George B, Fenton M, Firkins L, Top ten research priorities relating to life after stroke. The Lancet Neurology, volume 11, number 3, page 209, March 2012, doi: 10.1016/S1474-4422(12)70029-7
Petit-Zeman S, Stroke survivors have their say on research priorities. The Guardian, 29 November 2011
Surgery for Common Shoulder Problems
Rangan A, Upadhyaya S, Regan S, Toye F, Rees J, Research priorities for shoulder surgery: results of the 2015 James Lind Alliance patient and clinician priority setting partnership. BMJ Open, 2016, doi:10.1136/bmjopen-2015-010412
Tinnitus
Hall D, Mohamad N, Firkins L, Fenton M, Stockdale D, Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership. Clinical Investigation, volume 3, number 1, pages 21-28, doi: 10.4155/cli.12.129
Broomhead E, The Tinnitus Priority Setting Partnership. Audio infos number 67, page 20-21, February 2012
Urinary Incontinence
Buckley BS, Grant AM, Glazener CMA, Case study: A patient-clinician collaboration that identified and prioritised evidence gaps and stimulated research development. Journal of Clinical Epidemiology, May 2013, volume 66, issue 5, pages 483-489, doi: 10.1016/j.clinepi.2011.03.016
Buckley BS, Grant AM, Tincello DG, Wagg AS, Firkins L, Prioritizing research: Patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence. Neurology and Urodynamics, volume 29, issue 5, pages 708-714, June 2010, doi: 10.1002/nau.20816
McClurg D, The James Lind Alliance and Urinary Incontinence, Journal of the Association of Chartered Physiotherapists in Women's Health, Spring 2010, 106
Buckley BS, Grant AM, Tincello DG, Wagg A, Firkins L, Reaching a consensus on research priorities in urinary incontinence, Nursing Times.net, 9 December 2009
Buckley B, Identifying uncertainties to prioritise research, Nursing Times.net, 9 May 2008
Buckley B, Grant AM, Firkins L, Greene AC, Frankau J, Working together to identify research questions, Continence UK, 2007, volume 1, number 1
Vitiligo
Eleftheriadou V, Whitton ME, Gawkrodger DJ, Batchelor J, Corne J, Lamb B, Ersser S, Ravenscroft J, Thomas KS, Future research into the treatment of vitiligo: where should our priorities lie? Results of the vitiligo priority setting partnership. British Journal of Dermatology, volume 164, issue 3, pages 530-536, March 2011, doi: 10.1111/j.1365-2133.2010.10160.x
Eleftheriadou V, Whitton M, Top Ten uncertainties for the treatment of Vitiligo (pdf, 254.17 KB), Dispatches (The magazine of the Vitiligo Society), March 2011. Reproduced with kind permission of the Vitiligo Society
Lushey C, Setting priorities and reducing uncertainties for people with skin disease (SPRUSD) (pdf, 180.97 KB), Dispatches (The Magazine of the Vitiligo Society), March 2009. Reproduced with kind permission of the Vitiligo Society
Whitton M, The James Lind Alliance: An important initiative in fostering good research practices in all spheres of medicine, Skin Care Campaign News, issue 32, November 2005
Womb Cancer
Wan Y L, Beverley-Stevenson R, Carlisle D, Clarke S, Edmonson RJ, Glover S, Holland J, Hughes C, Kitchener HC, Kitson S, Miles T, Morley R, Morrison J, Nelson L, Powell M, Sadler L, Tomlinson A, Tylko-Hill K, Whitcombe J, Crosbie EJ, Working together to shape the endometrial cancer research agenda: The top ten unanswered research questions. Gynecologic Oncology, September 2016, doi:10.1016/j.ygyno.2016.08.333
Articles from Related Priority Setting Exercises -
Prioritising Recruitment in Randomised Trials (PRioRiTy)
Blog from Wendy Mitchell, who attended the priority setting workshop in December 2016
Dialysis priority setting in Canada
Manns B, Hemmelgarn B, Lillie E, Crowe S, Cyr A, Gladish M, Large C, Silverman H, Toth B, Wolfs W, Laupacis A, Setting Research Priorities for Patients on or Nearing Dialysis. Clinical Journal of the American Society of Nephrology, May 2014, doi: 10.2215/CJN.01610214
Dystrophic Epidermolysis Bullosa priority setting in Spain
Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, Rajan C, Garcia-Doval I, Current dystrophic epidermolysis bullosa research does not match research needs perceived by patients and clinicians. Journal of the American Academy of Dermatology, volune 71, issue 5, November 2014, pages 1008-1011, doi: 10.1016/j.jaad.2014.05.038
Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, de Lucas R, Dominguez E, Romero N, Monros E, Feito M, Carretero L, Aranegui B, Garcia-Doval I, Prioritization of therapy uncertainties in Dystrophic Epidermolysis Bullosa: where should research direct to? An example of priority setting partnership in very rare disorders. Orphanet Journal of Rare Diseases, 8:61, published 22 April 2013, doi: 10.1186/1750-1172-8-61
Epilepsy
Hughes EG, Thomas RH, Epilepsy treatment priorities:answering the questions that matter. Journal of Neurology, Neurosurgery and Psychiatry, 1 June 2017, doi: 10.1136/jnnp-2016-315135
Thomas RH, Hammond CL, Bodger OG, Rees MI, Smith PEM, Identifying and prioritising epilepsy treatment uncertainties. Journal of Neurology, Neurosurgery and Psychiatry, doi: 10.1136/jnnp.2009.192716

