The Data Hub
A Source for Real-World Hematology Data
Everything you need to know about ASH RC’s Data Hub
Have Questions? We Have Answers
Below you’ll find answers to the most commonly asked questions about ASH RC’s Data Hub. If you don’t find the answer you are looking for, please contact us via e-mail at info@ashrc.org or by using our handy Contact Us form by clicking the button below.
Data Hub Frequently Asked Questions
What happens after I submit my request to become a Data Hub site?
Upon receipt, a member of the Data Hub will contact you directly to provide a detailed overview of the Data Hub onboarding process and an enrollment packet, which includes the following resources and forms that must be completed as part of your application process:
- Data Hub welcome letter
- Site profile
- Data submission technology questionnaire
- Onboarding checklist
- Data Hub Site Agreement
- Regulatory materials (protocol, IRB approval letter, informed consent form template, etc.)
What does it cost to join the Data Hub?
There are no fees to enroll in the Data Hub; however, your institution may encounter costs associated with submitting data to the Data Hub. These costs will vary from institution to institution.
What is the estimated onboarding timeline from start to finish?
Enrollment time will vary by site, but we have found that the process typically takes an average of six to eight months. You can accelerate the process by identifying the key members of your site’s team, such as the research coordinator and technology team early on.
Who is the ASH Research Collaborative™ (ASH RC) technology vendor?
IQVIA is our technology partner who supports data collection, software development, and data analysis solutions for the Data Hub. IQVIA has extensive experience managing and integrating complex datasets from biomedical and healthcare research.
What type of dataset is submitted?
At a minimum, a limited dataset is shared (the ASH Research Collaborative™ executes a Data Use Agreement with each site to permit the transfer of this data). Upon collecting patient consent, a dataset containing direct identifiers may be shared with the ASH Research Collaborative™.
Where will Data Hub data be stored?
Data are stored in the Data Hub, a managed solution built on industry standard technologies including Ubuntu Linux and PostgreSQL. The Data Hub is a single tenant solution hosted in Rackspace; a private data center located in Northern Virginia.
Will I be able to export my own institution’s data?
Yes, Data Hub participants will have the ability to export their own institution’s data via their Site Portal.
Should sites use their local IRB or the Data Hub’s IRB?
We encourage all sites to use the Data Hub’s central IRB, Western Copernicus Group (WCG). Using WCG expedites the review process and has lower costs.
Does ASH RC cover costs associated with Western Copernicus Group?
We currently cover these costs. Please contact info@ashrc.org for more information.
How and what data are deleted when a patient withdraws consent?
Data for that patient remains in the Data Hub unless he/she/they requests that it be deleted. Moving forward, no direct identifiers (from the site) should be submitted to the Data Hub.
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2018 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.