Share your views on a research project into a jaw condition linked to cancer treatment

What’s the title of the study?

Patient opinion on Medication Related Osteonecrosis of the Jaws (MRONJ) Research Database: implementation and use

What’s the project about?

Medication Related Osteonecrosis of the Jaw (MRONJ) is a rare but serious side effect that can be linked to some drugs which act on bones or the immune system. These drugs are sometimes used in breast cancer treatment. 

It happens when some of the jawbone loses its blood supply and dies, which can lead to pain, swelling, infection or even broken jaws. 

The researchers in this study have recently launched a database which will gather information from people affected by MRONJ. They hope it will help improve care and understanding of the condition.

Now, they want to speak to people who are at risk of or have experienced MRONJ to understand how people should be recruited into this database. And how to share their results in a meaningful way.

Who’s organising it?

Name of project lead: Ailish Clark

Job title: Consultant in Oral Surgery

Organisation: University of Manchester

Email address: ailish.clark@postgrad.manchester.ac.uk

Phone number: 07927 503635

Who can take part?

You can take part if you:

• Are at risk of developing MRONJ 
• Have had a diagnosis of MRONJ now or in the past

Why do you want me to be involved?

This rare condition can have a big impact on daily life and wellbeing — but there’s still a lot we don’t know about it, including how people get it and how best to manage it.

If you’ve lived with or are at risk of MRONJ, your insights can help shape how researchers connect with others and how they share findings from the database.

Your voice can help ensure the database is used in a way that truly benefits people affected by this condition — not just what healthcare professionals think is best.

What will you ask me to do?

If you choose to take part, you’ll be invited to a one-off interview (online or by phone) at a time that suits you. This interview will last around 30–45 minutes.

You’ll be asked about your views on joining the database, sharing results, and how information should be collected. You won’t be asked to share personal medical details, and only your name will be recorded so that the researchers can assign you with a participant number.

As a thank you for offering your time and experience, you’ll receive £25 in the form of a Love2shop voucher, bank transfer or a donation to a charity of your choice. You also have the option to decline the payment if you prefer. The researchers will also provide a £5 reimbursement to help cover any internet or phone costs associated with your participation in the study.

How do I get involved?

To take part, or for more information on this study, please email ailish.clark@postgrad.manchester.ac.uk.

If you'd rather, you can also call Ailish on 07927 503 635 to arrange a time that works for you.

When’s the deadline?

31 July 2025