POOMAS

• Research type

  Research Study

• Full title

  Prognosis, treatment, and mechanisms in an international pediatric-onset opsoclonus myoclonus ataxia syndrome (POOMAS) database

• IRAS ID

  295574

• Contact name

  Ming Lim

• Contact email

  Ming.lim@gstt.nhs.uk

• Sponsor organisation

  Boston Children's Hospital

• Duration of Study in the UK

  3 years, 0 months, 0 days

• Research summary

  This project aims to establish an international database of clinical data on children with opsoclonus myoclonus syndrome (OMS). OMS is a rare neurological disorder affecting 1 out of 5 million children per year, typically presenting in the 2nd year of life with chaotic eye movements (opsoclonus), abnormal movements (myoclonus), unsteadiness (ataxia) and irritability. An autoimmune basis is implicated in the natural history of this condition, although no consistent immune marker has been identified.
  Through this database we aim to collect information to help determine disease course, prognostic factors, and treatment efficacy for children with OMS. We also plan to register the location of clinically obtained brain MRIs and biological material collected via other protocols on enrolled subjects, effectively creating a centralized virtual biospecimen registry. Due to the rarity of OMS, biospecimens (serum, plasma, cerebrospinal fluid, tumour tissue) and MRI data from patients with OMS is scarce, and often inaccessible to outside researchers. A centralized registry of available biological material and MRI linked to clinical data is necessary to accelerate OMS research.
  

• REC name

  Yorkshire & The Humber - Leeds West Research Ethics Committee

• REC reference

  22/YH/0058

• Date of REC Opinion

  22 Feb 2022

• REC opinion

  Favourable Opinion