Meet the team // 4th April 2019
Tell us a bit about your background?
My academic background is in health care management and I have a BA (Hons) undergraduate degree in Health Care Administration from Anahuac University in Mexico and a Postgraduate degree in Health Technology Assessment from the University of Sheffield. I also have a BA (Hons) in Philosophy from Pontificio Ateneo Regina Apostolorum in Rome. For the past seven years I have worked for a number of pharmaceutical companies and non-governmental organisations and I started working for Myeloma UK in October 2018.
What is your role with Myeloma UK?
I am the Project Manager, for the Myeloma UK Patient Registry Project. My main role at Myeloma UK is defining and coordinating the tasks required to scope out and initiate a myeloma patient registry in the UK. The patient registry project is an initiative within the Myeloma UK strategy to understand myeloma better and ensure that all patients get access to the best possible treatment, care, information, and support. If we are able to secure the right partnerships for funding and delivery, the registry would be the first myeloma specific patient registry in the UK.
What is a patient registry?
A patient registry is an organised collection of real-world evidence. It is like a large filing system where treatment outcomes data are stored and analysed. Patient registries allow researchers and clinicians to study “real-world” evidence to find new ways to improve patient quality of life and survivability.
What are the benefits of a myeloma patient registry?
There is a growing array of new treatments for patients, and this is, of course, a positive thing. However, if you add in the complexity and variability of myeloma itself, there is a real and growing need to understand which treatments and treatment combinations work best (and which don’t work so well) in which patients, and at different stages of myeloma. We hope that ultimately, the registry will generate large data sets which will help to provide further insight into the effectiveness of patient treatments and identify new approaches to improve the outcomes of myeloma patients in the UK.
Registries can be used be to gather the data evaluating the effectiveness of treatments in a “real-world” clinical setting. Clinical trials can have very specific entry conditions (e.g. age, prior treatments used, kidney function) which patients have to meet to take part in a clinical trial; therefore the patients who volunteer for clinical trials are often not representative of the patient population at large. Therefore registries can help bridge the gap between clinical trials and clinical practice, giving a more accurate picture to the safety and efficacy of approved treatments.
Collecting large amounts of data can help researchers learn more about commonalities between patients who respond well to treatment, have longer remission times or suffer from side effects. The registry will develop frameworks to inform clinical decisions for patient access to new treatments.
What do you see as the main challenges to developing a myeloma patient registry in the UK?
There are numerous challenges for the registry. The first one will be to secure the necessary funding for the implementation of the pilot stage. The registry will be the result of all the myeloma community working together, which includes patients, clinicians, researchers, academics, hospitals, and the NHS. So the challenge is to make sure that all of the community is involved during all of the stages of the registry in order to collect and deliver useful outcomes for everybody.
How is the project progressing?
The project is progressing well but we are only in the first stage. We are currently researching and engaging with other patient registries in the UK, Europe, and Australia to learn best practices and to scope out different approaches to registry design. During this initial scoping stage we are working closely with clinicians to determine the aims of the registry, to identify where gaps and opportunities are. This has involved the development of a group of key stakeholders working together to establish which data the registry should be collecting and the best methods to record and manage patient data.
What is coming up in the future?
We have a workshop coming up in early April which will be a significant milestone for the project. Here we will present our existing research and proposals to a number of representatives such as patients, clinicians, nurses, NHS and pharmaceutical companies. The feedback we receive will help inform the next stage of the project and we are very much looking forward to presenting our aims for the patient registry.