Using the Registry for Research
This information in the Registry has been entered by clinicians looking after affected participants. These data can be accessed for primary or secondary research subject to approval (see procedure below). The data held on the registry has not been subjected to any specific check for quality control by I-DSD and researchers are advised to practise due diligence and confirm the validity of the information with the clinician responsible for data entry.
Reasons for requiring Research Support from the Registry
- Search for cases
- Designing a study
- Preparing case for funding
- Performing a study (may require additional local ethical approval)
Procedure for obtaining Registry data for Research
Searching the Registry for data at centres other than the user’s own centre is only possible by the project management team. Depending on the amount of work involved data searches will incur a small fee and researchers are advised to contact Jillian Bryce for further information.
The I-DSD office can provide more extensive study support depending on the investigator’s needs and may include:-
- Advice on study process and design
- Liaising with Registry users on behalf of the study investigators
- Developing study specific modules
Prospective investigators should contact Jillian Bryce before embarking on, developing, or seeking funding for the study so that the costs of this proposed work can be clarified. Please complete a Data search form and a Data Sharing Agreement. Use the I-DSD/CAH data fields to identify fields required for your study.
Once submitted all study documents are sent to the Scientific Panel for approval.
The I-DSD Registry must be acknowledged on all publications that use the data with the following text.
“This research study was conducted through access to data held in the I-DSD/CAH registry (www.i-dsd.org / www.i-cah.org)”