Get involved with a research study

Are you a medical student? Are you undertaking work involving rare diseases? Your opinions could be invaluable for a research study looking into rare disease advocacy!

What is it for?

Currently, the medical curriculum does not focus enough on rare disease education, which makes it difficult to estimate the current involvement of medical students in the rare disease space.

Therefore this study, titled ‘The Role of Medical Students in Rare Disease Advocacy’, aims to identify the motivations as well as the challenges faced by medical students who participate in rare disease work. With this information, there’s the hope of informing medical education and supporting future medical students, which could translate to improved care for patients living with rare diseases.

Who is running it?

Anneliese and Lydia, two medical students from Australia, are running the study. Their supervisor, Dr Gareth Baynam, is a clinical geneticist.

Am I the right person?

 To be eligible for this study, you must:

• Be currently enrolled in a board-approved university-level program of study for medical practitioners

• Be undertaking your training

• Be over the age of 18

• Be currently or previously taking part in a project or work involving rare diseases 

What would I have to do?

Anneliese and Lydia would like to invite you to participate in a 30-minute interview to discuss your personal experiences and perspectives on this topic, which would be valuable to this study.

Why should I take part?

There is currently very little published data available about the participation of medical students in the field of rare diseases. With your input, the data from this study could result in improving recruitment pathways for medical students into rare disease projects, which in turn will result in a greater number of trainees who have a working awareness of the rare disease field and how to care for rare disease patients. Hopefully, this will eventually improve the care of patients living with rare diseases. However, this cannot begin to happen without your input!

How do I get involved?

If you would like to participate in the study, you can give your email to Lydia and Anneliese by filling out the Expression of Interest Google form *here*

For more details take a look at the participant information sheet, which you can find below.

I hope you take the opportunity to get involved in this study and give your valuable insights to the team!