SCAD and CAE Study

Tags: LCBRU Study Category

Overview

Extension of the SCAD Study to include patients with Coronary Artery Aneurysms / Ectasia funded by ​ Rare Diseases Translational Research Collaboration (​Website).

• RD-TRC Study Guidance​
• 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 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

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