23 Nov 2022
Research Opportunities for Clinicians (and some MEN2B patients)
For our health professional members, we have news of some collaborative research opportunities to get involved in, which we detail below.
1. SURGE Survey
The first is a short survey for clinicians on ‘opinions and attitudes to genetic testing in endocrine patients considered for surgery’. Scan the QR code below to complete the survey.
2. UK Collaborative Network research project: Primary Hyperparathyroidism in Children
This collaborative project will consist of two parallel studies:
- Diagnosis, treatment and outcomes of surgery in children with Primary Hyperparathyroidism in UK between 2000 and 2021
- UK wide genetic study of Primary Hyperparathyroidism in children; the somatic genetic drivers of PAs, PCs and hyperplasia
3. RET UK Collaborative Network Invitation for collaboration in a new research project: UK wide Review of treatments and outcomes in Children and Adults with MEN2B caused by 918 RET mutations
This project will entail a UK-wide review of current care and outcomes for children and adults diagnosed with Multiple Endocrine Neoplasia Type 2B (MEN2B) due to Met918Thr RET mutations. This is a very rare diagnosis, but it is well known to be associated with early development of medullary thyroid cancer, poor quality of life due to multiple pathologies and decreased life expectancy. Many of patients with MEN2B have de novo mutations therefore there is no family history, which makes it difficult to be diagnosed in a timely fashion. If you are a MEN2B patient with a 918 mutation, you can also self-refer yourself into this study.