Volume 9 (2022): Issue 1

Open Access | Mar 2022

Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries

• Amanda Bok
• Declan Noone
• Naja Skouw-Rasmussen
• on behalf of the Ehc Think Tank

Open Access | Mar 2022

Key challenges for hub and spoke models of care – A report from the 1st workshop of the EHC Think Tank on Hub and Spoke Treatment Models

• Amanda Bok
• Declan Noone
• Naja Skouw-Rasmussen

Open Access | Mar 2022

Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency

• Amanda Bok
• Declan Noone
• Naja Skouw-Rasmussen

Open Access | May 2022

Point of care ultrasonography in patients with haemophilia and acute haemarthrosis: a physiotherapist and sonographer inter-professional agreement pilot study

• Karen Strike
• Anthony KC Chan
• Monica R Maly
• Nina Stein
• Lynne Farrell
• Patricia Solomon

Open Access | Jan 2022

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
• Flora Peyvandi
• Kate Khair
• Luke Pembroke
• Kathryn Jenner

Open Access | May 2022

Treatment of a patient with severe haemophilia A presenting with left extra pleural haematoma and diagnosed with inhibitors – case report

• Arijit Das
• Anupam Dutta
• Ramanan BBV
• Sanchu TK Sreeraj

Open Access | Mar 2022

Osseous bilateral pseudotumour of the thumb in severe haemophilia A – A case report

• Prakas K Mandal
• Rishu Vidhrati
• Debasis Gantait

Open Access | Jul 2022

“I didn’t know women could have haemophilia”: A qualitative case study

• Simon Fletcher

Open Access | May 2022

Processes and experiences of satellite haemophilia clinic set-ups in Uganda – a short report

• Philip Kasirye
• Agnes Kisakye
• Annette Nakalyango
• Atwiine Barnabas

Open Access | May 2022

Discrete choice experiments: An overview of experience to date in haemophilia

• John Spoors
• Alec Miners
• John Cairns

Open Access | Sep 2022

Comparison of perioperative practices for placement of central venous access devices (CVAD) in children with haemophilia

• Celia Kwan
• Anthony KC Chan
• Pei Lin Koh
• Nur Insyirah Abdul Kadir
• Kay Decker
• Chiew Ying Lim
• Joyce Ching Mei Lam

Open Access | Jan 2022

Designing ATHN 7: Safety, effectiveness and practice of treatment of people with haemophilia in the United States through a natural history cohort study

• Tyler W. Buckner
• Nabil Daoud
• Moses Miles
• Carrie O'Neill
• Crystal Watson
• Michael Recht

Open Access | Oct 2022

Comparative evaluation and preference of MixPro® versus Mix2Vial® reconstitution devices among people with haemophilia and caregivers

• Jon Ulrich Hansen
• Cléa Percier
• Henrik Damgaard-Rasmussen
• Katherine Palmer

Open Access | Mar 2022

New challenges for an expanding generation of older persons with haemophilia

• Jamie O’Hara
• Declan Noone
• Persefoni Kritikou
• Karl-Johan Myren
• Steve Chaplin
• Daniel P Hart

Open Access | Apr 2022

Development of decision-making considerations to support equitable patient selection in paediatric haemophilia trials

• Anne Fu
• Karen Strike
• Korinne Hamilton
• Linda Waterhouse
• Kay Decker
• Theresa Almonte
• Anthony K C Chan

Open Access | Nov 2022

The Cinderella Study: women's lived experience of bleeding disorders – CSL Behring Symposium

• Debra Pollard
• Kate Khair

Open Access | Nov 2022

Advocacy worldwide for women with bleeding disorders

• Evelyn Grimberg

Open Access | Nov 2022

The Second European Conference on Women and Bleeding Disorders, Basel, Switzerland, 10–12 May 2022

• Naja Skouw-Rasmussen
• Evelyn Grimberg
• Declan Noone

Open Access | Nov 2022

Monitoring to improve quality of life in women with bleeding disorders

• Declan Noone
• Roseline d’Oiron

Open Access | Nov 2022

Ageing and women with bleeding disorders

• Sheila Radhakrishnan
• Roseline d’Oiron

Open Access | Nov 2022

Focus on musculoskeletal health in women with bleeding disorders

• Alison Dougall
• Laurent Frenzel