Stars Together Rare Disease Registry
Research type
Research Database
IRAS ID
229734
Contact name
Larissa Kerecuk
Contact email
Research summary
Stars Together Rare Disease Registry
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
17/WM/0424
Date of REC Opinion
13 Dec 2017
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Demographic and some clinical data will be collected from patients with rare diseases who consent to participate. Data is entered manually to a web based interface following patient consent. Access is by use of individual password. Researchers may apply to the Registry's Management Board for access to the data for the purposes of research.
Research programme
The purpose of the Stars Together Rare Disease Registry is to facilitate translational and epidemiological research into rare diseases by setting up and maintaining a comprehensive clinical database in partnership with Birmingham Children’s Hospital Rare Disease Centre. The Stars Together Registry uses the infrastructure of RaDaR – the rare kidney disease registry; which was set up following an initiative of the Medical Research Council (2008) to develop cohorts of well-categorized patients for translational research. RaDaR is a development of the Renal Association and is operated by the UK Renal Registry (UKRR) under the Research Ethics Committee reference 14/SW/1088. The Stars Together Registry facilitates the identification of well-characterized cohorts of patients who may be invited to participate in clinical trials, the development of biomarkers, phenotype-genotype correlations or outcome studies. This will inform the development of clinical guidelines for specific rare diseases and will audit treatment and outcome.
Research database title
Stars Together Rare Disease Registry
Establishment organisation
Birmingham Women’s & Children’s NHS Foundation Trust
Establishment organisation address
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
B4 6NH