A quick recap
Last month, we shared our findings on research grants allocated to sickle cell disease in comparison with cystic fibrosis and haemophilia from 3 main UK funders. We also described challenges, in terms of patient numbers, in the quality of the hospital data that we are using.
What have we been up to this month?
We have began to draft written outputs of our literature review and continue to progress with our analyses on specific indicators of inequality for sickle cell disease, cystic fibrosis and haemophilia, and our hospital data analysis work. In this month’s blog, we focus on collaboration, networking and the dissemination of our findings, which are important in developing and strengthening our research and enhancing the visibility and impact of our findings.
1. Collaboration: National Haemoglobinopathy Register (NHR)
For various and complex reasons, there is a lack of good data on sickle cell disease in the UK (as in most countries).
Fred met with the Deputy Chair of the NHR to discuss the quality and completeness of the Register and how the data held in the NHR could potentially be used in the future to study and document inequalities in sickle cell disease.
We are currently planning an event to find out what patients with sickle cell disease know about the NHR and what kind of scientific questions they would like it to be used for.
2. Networking: Ethnicity and Health Unit
On May 16th, Fred & Rutendo attended the celebration of the work of the Ethnicity and Health Unit (EHU) at Imperial College London and of Professor Mala Rao‘s (director of the EHU) CBE.
We have been collaborating with the EHU during this project who are offering their expertise on ethnicity and health research and are supporting us in developing our patient engagement work.
This event was a great opportunity to network with the EHU team and other experts in public health and ethnicity research.
3. Dissemination: Annual Sickle Cell and Thalassaemia conference (ASCAT) 2024 abstract
Rutendo submitted an abstract to the ASCAT conference which will be held in London from 2nd October to 5th October 2024. ASCAT is Fred‘s favourite scientific conference.
The event will showcase breakthroughs, advancement and other important research in sickle cell disease and thalassaemia. Health care professionals, researchers and people affected by sickle cell disease and thalassaemia will be attending the conference.
The abstract that we submitted covered our work on research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK in which we analysed publicly available data on research funding (described last month) and funding related outputs such as registered clinical trials, scientific publications and resources available to dedicated UK charities.
See you next month!