(duplicate) Clinical Endocrine Registry
Research type
Research Database
IRAS ID
210335
Contact name
R V Thakker
Contact email
Research summary
Clinical registry for endocrine and metabolic disorders
REC name
Scotland A: Adults with Incapacity only
REC reference
16/SS/0122
Date of REC Opinion
21 Oct 2016
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The aim of this application is to develop the first UK database of patients with endocrine and metabolic disorders, which will enable doctors to better understand the causes, natural history, environmental influences and outcomes of the diseases. The database will comprise patients’ clinical details (e.g. symptoms, age of onset, treatments, outcomes and family history), with results of blood, hormonal, urine, genetics, X-ray and special scan tests. The data will be collected by doctors and trained staff, after consent has been given by the participant. Participants will also be able to access and input their own data to a separate database, via a secure, password-protected website, which will allow for withdrawal of consent. The data will be stored anonymously on a secure server. Researchers wanting access to the database will be required to apply, in writing with a proposal, to a Data Access Committee (DAC) and the committee’s decision to share the data will be based on merit. Only anonymized data will be shared with external researchers. For audit and monitoring purposes, members of the University of Oxford or Oxford University Hospitals (OUH) will be given access to the database and information, thereby ensuring compliance of the study with regulations.
Research programme
Endocrine and metabolic disorders are common and may be caused by hormone excess, which may be associated with endocrine tumours, or hormone deficiency, that may be due to a congenital abnormality or autoimmune destruction of the gland. These disorders usually occur as non-familial (i.e. sporadic) disorders but they may also occur as familial diseases, in more than 10% of patients indicating the involvement of genetic abnormalities. The aim of this study is to establish a national database of patients with endocrine and metabolic disorders, as this will help to: 1) provide important clinical information that will help to inform the epidemiology, natural history, genetics and biology of these diseases; 2) inform on outcomes of investigations and treatments; 3) formulate clinical practice guidelines that will improve patient care; and 4) further our understanding of the mechanisms underlying these disorders. The national database will be of benefit to doctors and researchers investigating the epidemiology, genetics and cellular mechanisms of these diseases, as well as identifying suitable patients for clinical trials, aimed at assessing novel therapeutics. Patients and patient support groups will also benefit from improved care that will result from the clinical guidelines that will likely be generated by database.
Research database title
Clinical registry for endocrine and metabolic disorders
Establishment organisation
University of Oxford
Establishment organisation address
University of Oxford Research Services
Oxford
OX3 7LE