= SCAD Study Tags: [[LCBRU Study Category]] == Overview Extension of the [[SCAD Study]] to include patients with '''Coronary Artery Aneurysms / Ectasia''' funded by [[http://www.nihr.ac.uk/about/rare-diseases-translational-research-collaboration.htm | Rare Diseases Translational Research Collaboration]] ([[http://rd.trc.nihr.ac.uk/|Website]]). - [[attachment:Study guidance.doc|RD-TRC Study Guidance]] - [[attachment:NIHR RD-TRC Data Day Agenda (pm) 28th Jan 2015.docx|RD-TRC Data Day Agenda]] == Status ? == Contacts Principle Investigator:: Dave Adlam Investigator:: Abi Al-Hussaini RDCIT Training:: Vera Matser RDCIT Director:: Roger James == IT - [[REDCap Summary]] (Questionnaire: {{{Link}}}) === Upload of Data to RDCIT OpenClinica Instance - There are no specific data requirements for the RD-TRC, except that patient identifiable study data is stored in the RDCIT instance of OpenClinica by the end of the funding period (approx September 2016). - There is a [[attachment:GEL minimum data spec.xlsx|proposed data structure]] that is based on the data requirements of GenomicsEngland (GEL). This includes patient identiable details, consent, medical / family history, genetic / clinical tests, medication and more. There is, however, no formal link between RD-TRC and GEL and all fields that are mandatory in GEL are not mandatory for RD-TRC. - To this we can create a data definition (CRF) to facilitate our study data. - These data definitions (CRF) are published on the RDCIT OpenClinica site and reuse and collaboration are encouraged. **We are waiting for the requirements of data to be uploaded from Dave and Abi** == Ticktes [[TicketQuery(study=SCAD and CAE,status!=closed,order=priority,format=table,col=summary|type|priority|owner|component|time)]] [[BackLinks]]