The Superficial Siderosis Research Alliance is a REDCap consortium partner.
The REDCap Consortium has 4,841 active partners in 141 countries. REDCap software has generated over 1,122,000 projects from over 1,626,000 users. 12,760 journal articles cite REDCap.
REDCap provides automated export procedures for seamless data downloads to Excel and standard statistical packages (SPSS, SAS, Stata, R), as well as a built-in project calendar, a scheduling module, ad hoc reporting tools, and advanced features, such as branching logic, file uploading, and calculated fields.
Learn more about REDCap by watching a summary video (4 min).
Build online surveys and databases quickly and securely – Create and design your project rapidly using secure web authentication from your browser. No extra software is required.
Fast and flexible – Conception to production-level survey/database in less than one day.
Export data to common data analysis packages – Export your data to Microsoft Excel, PDF, SAS, Stata, R, or SPSS for analysis.
Ad Hoc Reporting – Create custom queries for generating reports to view or download.
e-Consent – Perform informed consent electronically for participants via survey
Easily manage a contact list of survey respondents or create a simple survey link – Build a list of email contacts, create custom email invitations, and track who responds, or you may also create a single survey link to email out or post on a website.
Scheduling – Utilize a built-in project calendar and scheduling module for organizing your events and appointments.
REDCap Mobile App – Collect data offline using an app on a mobile device when there is no WiFi or cellular connection, and then later sync data back to the server.
Send files to others securely – Using ‘Send-It’, upload and send files to multiple recipients, including existing project documents, that are too large for email attachments or that contain sensitive data.
Save your data collection instruments as a PDF to print – Generate a PDF version of your forms and surveys for printing to collect data offline.
Advanced features – Auto-validation, calculated fields, file uploading, branching/skip logic, and survey stop actions.
REDCap API – Have external applications connect to REDCap remotely in a programmatic or automated fashion.
Data Queries – Document the process of resolving data issues using the Data Resolution Workflow module.
Piping – Inject previously collected data values into question labels, survey invitation emails, etc. to provide a more customized experience.
REDCap is supported in part by the National Institutes of Health (NIH/NCATS UL1 TR000445)
Who May Access REDCap
Independent or institutional researchers and anyone pursuing a graduate program or post-graduate program projects associated with Superficial siderosis or any associated symptom of ataxia, hearing loss, or myelopathy may apply to become a research member Superficial Siderosis Research Alliance (SSRA).
Research under a principal investigator may occur at the individuals’ institution or under a multi-center network as long as the principal investigator on record is an SSRA research member. Multi-center research networks may have locations located outside the US. SSRA Research members’ use authorization includes access to the Superficial Siderosis Patient Registry participant databank.
The Superficial Siderosis Research Alliance is authorized and registered to act as a sponsoring organization. Research allianace members may present research proposals for direct sponsorship if they do not wish to undertake institutional research.
NOTICE: If you are collecting data for human subject research, your Institutional Review Board will be required to review and approve your project.
The Superficial Siderosis Research Alliance funds access for use of REDCap (Research Electronic Data Capture) software and maintain the access portal for the benefit of their research members. It is offered at no cost to all users. Our REDCap portal offers the ability to create practice projects. Online training videos and manual links will be made available.
SSRA research member investigators working on projects that do not require longer-term access to the REDCap databank may request to submit single personalized surveys to the patient registry members. Patient participation will be voluntary. Consent to share information collected through these direct surveys will be implied by the completed questionnaire’s voluntary return and from the patient registry member’s electronic permission given when they enrolled. Personally identifying information may not be collected. Requests for simple surveys will be reviewed for approval by the Superficial Siderosis Patient Registry administrator.
Requests from member investigators at academic institutions to access record-level REDCap data from the Superficial Siderosis Patient Registry (SSPR) databank must be reviewed and approved by the Superficial Siderosis Research Alliance and Patient Registry Governing Committee.
To uniformly address requests and ensure that we meet privacy standards, the SSPR has implemented a Data Application and Confidentiality Agreement, including our research member data access and publication policy. We anticipate that the review process for data requests will take no longer than two weeks after receipt of a complete data application, including the application, proof of Institutional Review Board (IRB) submission for your proposed project, a signed Confidentiality Agreement, and requested variable list. If a data request represents a significant time commitment to fulfill, we will advise you of our proposed timeline.
Access to REDCap will be limited to the duration of the project. Research members must re-apply for access when undertaking a new study.