Information for Clinicans (Adult Rare Bone Disease Network)

The Adult Rare Bone Disease MDT are for discussing the diagnosis of adults with a suspected rare bone disease or the ongoing management of adults with a rare bone disease diagnosis where there is clinical uncertainty. 

There are currently 5 Regional MDT’s holding regular meetings:

1. Southern MDT which is holding meetings on the 4th Thursday of each month from 9am to 10am.
2. London which is holding meetings on the 1st Thursday of each month from 1 to 2 pm
3. Midlands which is holding meetings quarterly (Mar, Jun, Sep, Dec) on the last Friday of the month from 3 pm to 5pm
4. East Anglia meet monthly (Dates for 2025 TBC)
5. North East meet quarterly Jan, April, July, Oct

We broadly divide adults into these groups:

1. Rare bone fragility –  OI, Hadju Cheney, pregnancy and lactation associated osteoporosis, undiagnosed severe primary fragility disorders after specialist MDT
2. Rare bone mineral and vitamin D disorders – X-linked hypophosphataemic rickets, Tumour induced osteomalacia, tumoral calcinosis, hypophosphatasia, and vitamin D-dependent rickets
3. Rare Skeletal Dysplasias (Achondroplasia, Pseudoachrondroplasia, multiple epiphyseal dysplasia, Cleido-cranial dysplasia etc 
4. Rare high bone mass and sclerosing conditions (osteopetrosis, pycnodysostosis, melorheostosis, Juvenile Paget’s)
5. Rare ectopic bone formation disorders (fibrous dysplasia/ McCune Albright syndrome, Hereditary multiple exostosis and enchondromatosis)

We strongly encourage trainees to be involved in this process.

Here are the 5 steps.

1) Join the MDT if you are not already part of it by completing the MDT Joining Form and emailing admin@brittlebone.org. All healthcare professional planning on attending the MDT have to register their details using the form.

2) Once you are registered for a Regional MDT you will be forwarded the meeting link along with a Case Referral Form and the Presentation Template.

3) The MDT lead will review the case details and feedback back if your case is appropriate for the MDT or can be managed another way.

4) Prepare your presentation (up to 5 minutes), we recommend you summarise the case in up to 2 slides and add any other information in another 2 slides.

5) Join the MDT and share your screen to share your presentation.

In this pilot phase, we only have a limited number of MDTs. If there is no MDT in your region, we strongly recommend you work with your local colleagues to identify a potential MDT lead who can then email the RDCN for next steps. While you can submit cases to other regional MDTs, they may prioritise patients from their locality and you may have to wait.