| 1 |
European principles of care for women and girls with inherited bleeding disorders
Karin P. M. van Galen, Michelle Lavin, Naja Skouw‐Rasmussen et al. · Haemophilia
Open access |
3 Aug 2021 |
82 |
| 2 |
The experiences of people with haemophilia and their families of gene therapy in a clinical trial setting: regaining control, the Exigency study
Simon J. Fletcher, Kathryn Jenner, Luke Pembroke et al. · Orphanet Journal of Rare Diseases
Open access |
4 Apr 2022 |
55 |
| 3 |
The lived experience of women with a bleeding disorder: A systematic review
Anna Sanigorska, Steve Chaplin, MICHAEL G. HOLLAND et al. · Research and Practice in Thrombosis and Haemostasis
ReviewOpen access |
2022 |
40 |
| 4 |
An exploration of why men with severe haemophilia might not want gene therapy: The exigency study
Simon J. Fletcher, Kathryn Jenner, MICHAEL G. HOLLAND et al. · Haemophilia
|
15 Jul 2021 |
35 |
| 5 |
The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study
Paul McLaughlin, Michael Hurley, Pratima Chowdary et al. · Disability and Rehabilitation
Open access |
24 Dec 2021 |
31 |
| 6 |
Parental perspectives on gene therapy for children with haemophilia: The Exigency study
Kate Khair, Lisa Steadman, Steve Chaplin et al. · Haemophilia
|
20 Nov 2020 |
29 |
| 7 |
The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)
Sylvia V. Mackensen, Linda Myrin Westesson, Kaan Kavaklı et al. · Haemophilia
|
11 Apr 2019 |
25 |
| 8 |
The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)
Kate Khair, Anna Klukowska, Linda Myrin Westesson et al. · Haemophilia
|
29 Mar 2019 |
24 |
| 9 |
Study of physical function in adolescents with haemophilia: The SO‐FIT study
Kate Khair, MICHAEL G. HOLLAND, Melanie Bladen et al. · Haemophilia
|
14 Aug 2017 |
23 |
| 10 |
The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me
Simon J. Fletcher, Kathryn Jenner, MICHAEL G. HOLLAND et al. · Health Expectations
Open access |
8 Dec 2021 |
19 |
| 11 |
The UK haemophilia specialist nurse: Competencies fit for practice in the 21st century
Debra Pollard, Catherine R. Harrison, Sandra Dodgson et al. · Haemophilia
Open access |
20 Apr 2020 |
19 |
| 12 |
Managing hemophilia: the role of mobile technology
Kate Khair, Mike Holland · Smart Homecare Technology and TeleHealth
Open access |
May 2014 |
18 |
| 13 |
How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study
Paul McLaughlin, Michael Hurley, Pratima Chowdary et al. · Disability and Rehabilitation
Open access |
24 Dec 2021 |
17 |
| 14 |
HOw Patients view Extended half‐life products: Impressions from real‐world experience (The HOPE study)
Kate Khair, Debra Pollard, Catherine R. Harrison et al. · Haemophilia
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10 Jun 2019 |
17 |
| 15 |
The views of women with bleeding disorders: Results from the Cinderella study
Kate Khair, Debra Pollard, Lisa Steadman et al. · Haemophilia
|
13 Feb 2022 |
16 |
| 16 |
Humanistic burden of problem joints for children and adults with haemophilia
Tom Burke, Idaira Rodríguez Santana, Pratima Chowdary et al. · Haemophilia
Open access |
27 Dec 2022 |
15 |
| 17 |
Fitness enhances psychosocial well‐being and self‐confidence in young men with hemophilia: Results from Project GYM
Kate Khair, MICHAEL G. HOLLAND, Sandra Dodgson et al. · Research and Practice in Thrombosis and Haemostasis
Open access |
27 Nov 2021 |
13 |
| 18 |
Expectation and loss when gene therapy for haemophilia is not an option: An exigency sub‐study
Simon J. Fletcher, Kathryn Jenner, MICHAEL G. HOLLAND et al. · Haemophilia
|
7 Mar 2023 |
12 |
| 19 |
Culture, cognisance, capacity and capability: The interrelationship of individual and organisational factors in developing a research hospital
Kate Oulton, Jo Wray, Paula Kelly et al. · Journal of Clinical Nursing
Open access |
27 May 2021 |
12 |
| 20 |
The effectiveness and safety of octocog alfa in patients with hemophilia A: up to 7-year follow-up of the real-world AHEAD international study
Margareth Castro Ozelo, Cedric R.J.R. Hermans, Manuel D Carcao et al. · Therapeutic Advances in Hematology
Open access |
2024 |
11 |
| 21 |
Prevalence and perceptions of pain in people with haemophilia: A UK study
Kate Khair, Paul McLaughlin, Nathalie Anne Roussel et al. · Haemophilia
Open access |
11 Sep 2023 |
11 |
| 22 |
Disease Burden, Clinical Outcomes, and Quality of Life in People with Hemophilia A without Inhibitors in Europe: Analyses from CHESS II/CHESS PAEDs
Pratima Chowdary, Richard Ofori‐Asenso, Francis Nissen et al. · TH Open
Open access |
Apr 2024 |
10 |
| 23 |
Project GYM: A randomized feasibility study investigating effect on motivation of personal trainer‐led exercise in young men with hemophilia
Paul McLaughlin, MICHAEL G. HOLLAND, Sandra Dodgson et al. · Research and Practice in Thrombosis and Haemostasis
Open access |
27 Nov 2021 |
10 |
| 24 |
The journey of gene therapy in haemophilia – putting the patient at the centre of the hub and spoke model
Declan Noone, Jan Astermark, Brian O’Mahony et al. · The Journal of Haemophilia Practice
Open access |
2022 |
9 |
| 25 |
Barriers to gene therapy, understanding the concerns people with haemophilia have: an exigency sub-study
Simon J. Fletcher, Kathryn Jenner, MICHAEL G. HOLLAND et al. · Orphanet Journal of Rare Diseases
Open access |
10 Feb 2024 |
9 |
| 26 |
The impact of factor infusion frequency on health-related quality of life in people with haemophilia
Gabriel Pedra, P Christoffersen, Kate Khair et al. · The Journal of Haemophilia Practice
Open access |
2020 |
8 |
| 27 |
The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia
Monika Bullinger, Diandra Latibeaudiere Gardner, Hannah B Lewis et al. · The Journal of Haemophilia Practice
Open access |
2021 |
7 |
| 28 |
Expert opinion on the UK standard of care for haemophilia patients with inhibitors: a modified Delphi consensus study
Kate Khair, Elizabeth A. Chalmers, Thuvia Flannery et al. · Therapeutic Advances in Hematology
Open access |
2021 |
7 |
| 29 |
Bleeding and quality of life in people with Glanzmann thrombasthenia—insights from the Glanzmann’s 360 study
Kate Khair, Simon J. Fletcher, Matthew Boyton et al. · Research and Practice in Thrombosis and Haemostasis
Open access |
Oct 2024 |
6 |
| 30 |
Physical function and quality of life in adolescents with haemophilia (SO-FIT study)
Kate Khair, Melanie Bladen, MICHAEL G. HOLLAND · The Journal of Haemophilia Practice
Open access |
May 2013 |
6 |
| 31 |
A novel gene editing lexicon strategy for the haemophilia community: Research plan for development and preliminary results
Cedric R.J.R. Hermans, Leonard A. Valentino, Courtney D. Thornburg et al. · Haemophilia
Open access |
22 Oct 2024 |
5 |
| 32 |
Shared decision-making for gene therapy in haemophilia care
Simon J. Fletcher, Kathryn Jenner, Kate Khair · The Journal of Haemophilia Practice
Open access |
2023 |
5 |
| 33 |
Exploration of the impact of gene therapy on the lives of people with haemophilia and their families: a protocol for the mixed-methods exigency study
Simon J. Fletcher, Luke Pembroke, Mike Holland et al. · BMJ Open
Open access |
Aug 2022 |
5 |
| 34 |
Effect of Moderate and Severe Hemophilia a on Daily Life in Children and Their Caregivers: A CHESS Paediatrics Study Analysis
Kate Khair, Francis Nissen, Mariabeth Silkey et al. · Blood
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4 Nov 2020 |
5 |
| 35 |
Examination and Validation of a Patient-Centric Joint Metric: "Problem Joint"; Empirical Evidence from the CHESS US Dataset
Tom Burke, Idaira Rodríguez Santana, Pratima Chowdary et al. · Blood
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5 Nov 2020 |
4 |
| 36 |
Switching factor products: nurses’ experience with NovoEight
Debra Pollard, Kate Khair, MICHAEL G. HOLLAND · The Journal of Haemophilia Practice
Open access |
2020 |
4 |
| 37 |
One day at a time: Life with Glanzmann thrombasthenia – Qualitative results from the GT 360 study
Kate Khair, Simon J. Fletcher, Kathryn Jenner et al. · Haemophilia
Open access |
Nov 2024 |
3 |
| 38 |
Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study
Paul McLaughlin, Pratima Chowdary, Kate Khair et al. · Pilot and Feasibility Studies
Open access |
8 Oct 2024 |
3 |
| 39 |
Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia
Paul McLaughlin, Michael Hurley, Pratima Chowdary et al. · Orphanet Journal of Rare Diseases
Open access |
Dec 2023 |
3 |
| 40 |
The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies
Masoume Rambod, Nilofar Pasyar, Fatemeh Irannejad Parizi et al. · Haemophilia
Open access |
20 Oct 2022 |
3 |
| 41 |
“It's a way of life”: Results from the Perceptions of Pain in Haemophilia study
Kate Khair, Jarek Kriukow, MICHAEL G. HOLLAND · The Journal of Haemophilia Practice
Open access |
2021 |
3 |
| 42 |
“You’re only a carrier” – women and the language of haemophilia
Steve Chaplin, Kate Khair · The Journal of Haemophilia Practice
Open access |
2021 |
3 |
| 43 |
A multi-country snapshot study of pain in people with haemophilia
Greta Mulders, Hanne Thykjær, Kate Khair · The Journal of Haemophilia Practice
Open access |
2020 |
3 |
| 44 |
Young people’s experience of transition from paediatric to adult haemophilia care in the UK
Luke Pembroke, Sandra Dodgson · The Journal of Haemophilia Practice
Open access |
Dec 2018 |
3 |
| 45 |
Development of a novel gene editing lexicon for hemophilia: methodology and results
Craig M. Kessler et al. · Research and Practice in Thrombosis and Haemostasis
Open access |
Feb 2025 |
2 |
| 46 |
A multi-stakeholder collaborative approach to awareness, education and support needed in the haemophilia gene therapy patient journey – a report on insights from a European patient advisory board
Brian O’Mahony, Simon J. Fletcher, Manuel A. Baarslag et al. · The Journal of Haemophilia Practice
Open access |
2024 |
2 |
| 47 |
An Insight into the Impact of Hemophilia a on Daily Life According to Disease Severity: A Preliminary Analysis of the CHESS II Study
Declan Noone, Francis Nissen, Tao Xu et al. · Blood
Open access |
5 Nov 2020 |
2 |
| 48 |
Perceptions and attitudes towards gym use and physical activity in young men with haemophilia
Luke Pembroke, Laurence Woollard · The Journal of Haemophilia Practice
Open access |
2020 |
2 |
| 49 |
Transforming Transition: enhancing practice in haemophilia
Sandra Dodgson, Mike Holland, Luke Pembroke et al. · The Journal of Haemophilia Practice
Open access |
Dec 2018 |
2 |
| 50 |
The Kids' immune thrombocytopenia Tool is not suitable for assessing quality of life in children with platelet function disorders
Kate Khair, MICHAEL G. HOLLAND · Haemophilia
|
Jul 2018 |
2 |