T15 — FAIR­i­fi­ca­tion of study data in clin­i­cal and epidemi­o­log­i­cal research — NFDI4Health Tutorial.

Day, Time, Duration

Thurs­day after­noon, 2 pm‑6 pm, 4h

Language Offered

English

Short Descrip­tion

Part 1 (14:00 – 15:15 hrs) Hands-on work­shop on the German Central Health Study Hub

In the first part of the work­shop, partic­i­pants will learn how to share their stud­ies (=meta­da­ta) and make them find­able by publish­ing them on the NFDI4Health meta­da­ta portal, the German Central Health Study Hub. After a presen­ta­tion of the meta­da­ta portal and its func­tion­al­i­ties, we will joint­ly enter the meta­da­ta of an exam­ple study into the input mask of the portal. We will present the differ­ent sections of the input mask and explain all fields that must be filled in for a publi­ca­tion of the meta­da­ta accord­ing to the FAIR data prin­ci­ples. Final­ly, we look at an already published entry and show which addi­tion­al fields can be filled in. In addi­tion, we will present which further study docu­ments, such as ques­tion­naires or data dictio­nar­ies, can also be published via NFDI4Health.

Part 2 (15:20 – 16:35 hrs) Harmon­i­sa­tion of research data

In this part of the work­shop, partic­i­pants will learn how to make their research data inter­op­er­a­ble. To do this, we will go togeth­er through a step-by-step guide (harmon­i­sa­tion proto­col) and present tools that were devel­oped in Mael­strom, an estab­lished Cana­di­an harmon­i­sa­tion initia­tive, and adapt­ed by NFDI4Health to meet the needs of the German scien­tif­ic commu­ni­ty. These tools enable the collec­tion of meta­da­ta describ­ing research data, as well as the prepa­ra­tion for the harmon­i­sa­tion itself. This infor­ma­tion is then used to deter­mine the poten­tial for harmon­i­sa­tion and assign specif­ic harmon­i­sa­tion rules. Using an exam­ple data set with 5 typi­cal vari­ables, we apply the appro­pri­ate harmon­i­sa­tion rules and create reports on the success of the harmonisation. 

Part 3 (16:40 – 18:00 hrs) Hands-on work­shop on feder­at­ed data analy­ses using DataSHIELD

During the DataSHIELD session of this work­shop, the partic­i­pants will become acquaint­ed with the feder­at­ed data analy­sis plat­form DataSHIELD which will not only be used in NFDI4Health use cases but has already been success­ful­ly applied in previ­ous inter­na­tion­al projects. Besides getting an intro­duc­tion to DataSHIELD, learn­ing about advan­tages and limi­ta­tions, atten­dees of this work­shop will also learn how NFDI4Health can support insti­tutes in imple­ment­ing the DataSHIELD infrastructure.

In the inter­ac­tive session that follows, partic­i­pants will have the oppor­tu­ni­ty to explore DataSHIELD and inter­act with harmonised exam­ple data that have been uploaded to Opal Servers of the work­shop organisers.

Subject Require­ments

The tuto­r­i­al is aimed at researchers who collect and analyze study data and are inter­est­ed in making these data FAIR, e.g. to improve the discov­er­abil­i­ty of their study data and/or to enable compa­ra­bil­i­ty and inter­op­er­abil­i­ty with other datasets.  In addi­tion, there will be an intro­duc­tion to how data hold­ers can partic­i­pate in distrib­uted data analyt­ics projects, what infra­struc­ture is need­ed to do so, and what tools and support NFDI4Health offers to do so. For this part, expe­ri­ence with R and RStu­dio would be helpful.

Like­wise, the tuto­r­i­al is aimed at employ­ees work­ing in the field of research data manage­ment who would like to expand their knowl­edge in the area of FAIR data, (e.g. publish­ing person­al health data in compli­ance with data protec­tion stan­dards) data harmo­niza­tion or distrib­uted data analy­sis infrastructures.

Tech­ni­cal Requirements 

Laptop with wifi access to access the NFDI4Health data portal; for the second part, it would be useful to have R and RStu­dio installed.

Orga­niz­er

Julia Fürst

Flori­an Schwarz

Insti­tu­tion

ZB MED Infor­ma­tion Center Life Sciences, Bonn

Contact

fuerst [at] zbmed.de

Additional Speaker

Vera Clemens

Franziska Jannasch

Guil­laume Fabre

Caroli­na Schwedhelm

Sofia Maria Siampani

Insti­tu­tion

Deutsches Insti­tut für Ernährungsforschung

Max Delbrück Center