What is the Exigency Study? feat. Lead Investigator & Research Nurse Simon Fletcher, Oxford University Hospitals NHS Trust
Haemcast28 Jan 2022

What is the Exigency Study? feat. Lead Investigator & Research Nurse Simon Fletcher, Oxford University Hospitals NHS Trust

You might have seen Haemnet posting about and recruiting for the Exigency Study last year. We found ourselves getting a lot of questions and comments about the study from "what does exigency mean?" to "what is the study about?"... So we invited Lead Investigator, PhD candidate and haemophilia research nurse, Simon Fletcher to give us the low down on the Exigency Study. So listen in to find out more about the experiences of people with haemophilia and gene therapy, qualitative research methods and more. Drop us a Tweet or email if you have any other questions about the study.

Twitter: @haemnet

Email: hello@haemnet.com

Resources:

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Episoder(42)

Ports, pressure and panic — Coping with haemophilia treatment challenges

Ports, pressure and panic — Coping with haemophilia treatment challenges

In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we look at some of the challenges that can arise when treating a child with haemophilia.Getti...

25 Jun 31min

"I'm the worrier in our relationship" — Being the partner of a person with a bleeding disorder

"I'm the worrier in our relationship" — Being the partner of a person with a bleeding disorder

The next in our special collaboration between Haemcast and Local families with bleeding disorders focuses on the partners of people who live with haemophilia and von Willebrand disease. Anya, Emma and...

27 Mai 29min

"Everything's new with haemophilia" — Treatment choices and changes

"Everything's new with haemophilia" — Treatment choices and changes

When making choices about treatment for a bleeding disorder, for a child or for yourself, what matters most? In this episode of Haemcast’s special series in collaboration with Local families with blee...

30 Apr 29min

Sticky blood, teddies and teens — Talking to children about their bleeding disorder

Sticky blood, teddies and teens — Talking to children about their bleeding disorder

When it comes to managing family life with a child who has a bleeding disorder, parents aren’t just caregivers – they’re organisers, advocates and educators. Alongside managing their child’s condition...

31 Mar 34min

Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard

Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard

The first in a special Haemcast series in collaboration with Local families with bleeding disorders, exploring aspects of family life.In this episode, members of Local families with bleeding disorders...

5 Mar 34min

Banana sap, mangos and factor IX — a Ugandan haemophilia B journey

Banana sap, mangos and factor IX — a Ugandan haemophilia B journey

Morris Okello lives in Northern Uganda. In this episode of Haemcast, he tells Dr Kate about the childhood experiences that eventually led to him being diagnosed with haemophilia B. As well as describi...

9 Okt 202525min

Quality of life in the balance: Helen Tate on living with Factor V deficiency

Quality of life in the balance: Helen Tate on living with Factor V deficiency

Dance teacher and Haemophilia Society trustee Helen Tate talks with Haemnet's Dr Kate Khair about living with Factor V deficiency, a rare bleeding disorder that affects around one in a million people....

21 Aug 202522min

Looking back on Terence's life: Haemophilia then and now, with Kate Khair

Looking back on Terence's life: Haemophilia then and now, with Kate Khair

Following our six-part mini-series 'Reflections on a life with severe haemophilia', with Terence O'Rourke, Haemnet's Dr Kate Khair considers some of the things that have changed in haemophilia care du...

30 Jul 202518min

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