1. US National Heart, Lung, and Blood Institute Data Repository
Sean Coady, Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute

2. NHLBI Data Repository (aka BioLINCC)
1999 NHLBI IRB approves repository protocol. Website opens in 2000
BioLINCC established in 2009 to coordinate activities of Data Repository and Biorespository,
Data access requests:
Ethics/IRB committee approval or certification of exemption from review
Describe project
Agree to terms and conditions of data use agreement
Administrative review only

3. Current portfolio: 40 Observational studies, 110 trials, 670,000 participants

4. Cumulative access requests for trial and observational study data

5. Annual average number of data access request per study per year available (2012 – present)

6. Time to “Incident” publication by type of study (through January 2017)
1 Year
CT: 5.1%
OS: 2.8%
776 publications
53 Trials 1+ publications
18 Observational studies 1+ publications
3 Year
CT: 21.1%
OS: 19.9%
5 Year
CT: 37.6%
OS: 42.0%
Notes. Time 2 pub by PI. 28% within 3 years and 35% within 5. Right about half publish at all.
Log-rank p=0.714

7. Cost and effort Total annual cost $1M (US) per year Effort (FTEs)
Approximately half associated with biospecimens and half for data activities
Effort (FTEs)
Total FTE
Web platform, maintenance, document remediation/posting
2.30
Analytic Support (review, data prep, queries with submitters)
1.40
Biospecimen support (search, pull lists, inventory management)
1.15
Communication (access requests, user support, web documents prep)
0.75
Senior Management
0.80

8. Future directions Indexing datasets, moving toward FAIR compliance
Cloud platform to support digital images, signal data, etc.

9. https://biolincc.nhlbi.nih.gov/home/