Big dreams to big data: how I used the UK MS Register

Mon 26 September 2022

Raghda Shaban Tawfeeq Al-Najjar

Raghda Shaban Tawfeeq Al-Najjar is a PhD student at the University of Cambridge researching the genetics of MS. She told us about expanding her skills in data handling with the UK MS Register. And her future hopes as an MS researcher.

Becoming a researcher

Since my childhood, I've been fascinated by the human body and the sciences. Over the last 15 years, I studied and worked as a doctor, getting a master's in neurophysiology. I wanted to do more and make a difference.

I chose to challenge myself and try to beat the odds, so I searched for a PhD abroad. As a married woman, a mother and coming from Iraq, I had some obstacles to overcome.

Over two years, I emailed more than 200 professors! I was pleased to secure my PhD with Professor Stephen Sawcer at the University of Cambridge. My dream became a reality thanks to Rowan Williams Cambridge Studentship.

We’re hoping we’ll find out why some people with MS have a more progressive condition than others.

My PhD research

Having certain versions of certain genes can change your risk of getting MS or how it progresses. My PhD project is about one particular gene difference or 'variant' that our lab recently found plays a role in MS progression.

Our lab found for the people who had a particular version of this gene variant, their disability progressed three years faster than others without it. Interestingly, this gene variant is sandwiched between two other genes that are relevant to MS progression. Now, I am investigating how this gene variant affects MS progression.

We’re hoping we’ll find out why some people with MS have a more progressive condition than others. And that this'll lead to the development of drugs specific for progressive MS.

The UK MS Register datathon

I’m still in the process of learning all the new skills I’ll need to tackle my research question. I recently attended my first ever datathon. It’s not a new sporting event! It’s where people get together in teams and have a short time to work on a data project.

We used the MS Register as our source. The MS Register contains 'big data', which just means there’s lots of it. And the data’s complex.

We first had training and a chance to practice. In teams, we picked a research question and tried to answer it. We had just six hours and could only use the MS Register data! So we didn’t expect to make any significant discoveries. We just hoped we could identify promising possibilities for further investigation.

It’s different to my research question, but genetics also uses a lot of big data. So I’ll be able to apply my new skills in my project too.

I recently attended my first ever datathon. It’s where people get together in teams and have a short time to work on a data project.

Quick-fire research

Our team decided to ask whether the psychological state could predict MS disability progression. We linked scores of anxiety and depression with the EDSS score which measures disability. As a team, we worked together to analyse the data in the MS Register to answer this question.

But all research needs to be verified and checked by other scientists before we share it more widely. Luckily, the MS Register team said we can continue to have access to the data and carry on this research. And they’ll help us with publications if it leads to more results.

Read an example of research using the UK MS Register data

Using the data in the future

The MS Register has the responses from over 17,000 people with MS! So knowing how to use it can definitely shorten the time to collect data.

It’s usually so difficult to gather information from so many people from different areas of the UK. But with MS Register, participants are regularly answering questions. All researchers have to do is design a meaningful study and work on the data. We’re grateful to the people with MS for their continuous support and loyal participation in collecting the data.

I would definitely use the MS Register again if I need to do some data analysis to support my research. Or if I have a new idea! Now I achieved my dream of being a researcher I’m excited to find out where this research will lead.

Our Stop MS Appeal

We're raising more funds over the next five years so the UK MS Register can continue to collect data and support ground-breaking research studies. And your support could help researchers spot patterns that could lead to major scientific breakthroughs.

Donate now to stop MS