Today, we’re pleased to share an update from Mashal Asif who is the DMD Hub Clinical Trial Coordinators at Bristol Royal Hospital for Children
Bristol officially joined the DMD Hub in 2018, with £41,151 in funding for a Clinical Trial Coordinator post. The funding for this post is kindly supported by the Mulberry Trust.
Mashal Asif spoke to us about her role:
Currently I work as the DMD Hub Trials Coordinator within Neuromuscular research, at the University Hospitals Bristol and Weston NHS Foundation Trust, where Paediatric Neuromuscular services are delivered within Bristol Royal Hospital for Children.
What did you do before starting your role with the DMD Hub?
I gained experience in research during my Masters in Health Psychology from the University of Bath. I was involved in all the various stages of conducting research, including ethics, study protocol, participant recruitment and testing, data collection, examination and dissemination. I also had the opportunity to work at a Blood and Transplant lab where I was involved with an individual project to organise the testing, data collection and data input of specialised patient blood samples.
What does your role as DMD Hub Trial Coordinator involve?
Since joining the team, I have been involved with setting up and supporting several ongoing phase 2 and 3 studies, including an open label extension study with WAVE and PolarisDMD. More recently, I’ve helped set up the open label extension study to Polaris called GalaxyDMD, which will assess the effect in long-term dosing of edasalonexent. Additionally, I have worked on observational database studies, like the Stride Translarna Registry.
I’ve also had the opportunity to attend Neuromuscular Multidisciplinary Team meetings, as well as to sit in and observe DMD patient clinics. I am a key point of contact for patients and their families, as well as liaising with the Clinical Neuromuscular and Research teams. My role as a DMD Hub Trial coordinator is the only specialised coordinator for DMD studies in Bristol. This enables me to focus primarily on the DMD population and work closely with consultants and nurses who have expertise in this area.
Given the circumstances with COVID-19, I have helped adapt the way studies and protocols are conducted; organising remote study and monitoring visits; supporting new trials coming in and conducting feasibility surveys; keeping patients and families informed and up to date with Trust guidelines during this difficult time.
How has the DMD Hub Clinical Trial Coordinator Network helped you in your role?
Being part of the DMD Hub CTC Network and having regular communications with the DMD Hub, allows me to keep up to date with what’s happening in the DMD world. I am able to connect with other coordinators at different research sites and discuss the accomplishments and challenges faced during study visits. This sharing of knowledge and expertise allows me to relay important information back to the Bristol Research team and implement new changes at our site in order to provide the best clinical care possible for our patients and their families.
Being a part of the network will also allow me to participate in future study training days and to benefit from other training tools and methods to aid in the smooth running of DMD clinical trials at Bristol
We are very grateful to Mashal, and the wider team at Bristol, for their involvement in the DMD Hub.