Using Open Data in Research Dr. Saif Aldeen AlRyalat University of Jordan

How much we spend on research? In 2010, the world spent 1 trillion dollar in R&D. In 2013, USA and China alone spent 1 Trillion dollar. The average cost of a single clinical trial is around 40 million dollar.

Research in Jordan High educational levels. Very limited resources. <0.28% Expenditure from GDP on R&D 

What is Open Data? Open data is data that can be freely used, re-used and redistributed by anyone to the requirement to attribute and share-alike.

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must also be available in a convenient and modifiable form. Re-use and Redistribution: (including the intermixing with other datasets). Universal Participation: everyone must be able to use, re-use and redistribute

Rationale behind Open Data Honoring participants. Huge resources spent for data. Unleash innovation.

How we honor participants? Around 100,000 cancer patients participate each year in several cancer trials. Most of the participants want to end cancer by allowing medical professionals to study their cases or try new agents on them. By engaging researchers from around the world to study their anonymous data, we can get the most benefit possible.

Pros and Cons of Open Data Allow maximum benefits from the research. Allow other innovative researchers to use these data for new findings. Cons: Waste the efforts of the primary investigators. Misuse by non-professionals.

How we can get all Pros without the Cons?

Gatekeeper model Distinct entity to house information in a central repository, with access to specific data sets that are provided to qualified research teams on the basis of a research proposal review by an independent expert committee. This model can assure an appropriate use of data by professionals in the field. It also lead to data citation as an incentive for the primary investigators.

Open Data models

ADNI study

Alzheimer’s Disease Neuroimaging Initiative (ADNI) 17 years with 220 million dollar funding on 1800 participants. For each participant: Clinical data Genetic data (Whole Genome Sequencing) Imaging data (by MRI and PET) Laboratory data (Blood, Urine, and CSF) More than 1000 publications.

ADNI access The application must include the investigator’s institutional affiliation and the proposed uses of the ADNI data. 

Tools provided by ADNI Several software allows non- experts to deal with imaging data. E.g. It allows researchers to perform 2-D image segmentation in brain MR image data.

Support provided by ADNI If you have any questions regarding any aspect of the ADNI data, just ask them.

SPRINT study

SPRINT challenge On March 7th 2017, New England Journal of Medicine (NEJM) started a challenge to do a new novel study using data from a published study in NEJM. The study is the Systolic Blood Pressure Intervention Trial (SPRINT).

SPRINT trial The study aim was to compare the outcome of standard versus intensive systolic blood pressure (sBP) lowering. 4678 patients received intensive sBP lowering (sBP < 120 mmHg), and 4683 patients received standard sBP lowering (sBP<140 mmHg).

SPRINT challenge results More than 140 novel articles in around 4 months. One of them published in NEJM, which is the most prestigious journal (impact factor 72). New online software to calculate the best sBP for each patient, which was not available in the original work.

The Framingham Heart Study

The Framingham Heart Study In 1932, Roosevelt’s office released medical records showing his blood pressure to be 140/100 mm Hg, which did not prompt any medical intervention. Roosevelt died on April 12, 1945, at the age of 63, from cerebral haemorrhage, with a blood pressure of 300/190 mm Hg. In 1948, the National Heart Institute was established.

The Framingham Heart Study The study began in 1948 with 5,209 adult subjects from Framingham city. Prior to it almost nothing was known about the "epidemiology of hypertensive or arteriosclerotic cardiovascular disease". Several years ago, FHS celebrated 65 years with more than 1000 publications and changed the face of cardiovascular system.

Human Genome Project

Human Genome Project An international biological research project, launched in 1990, with the goal of sequencing the human genome for the first time and making the data freely available online.

Human Genome Project The Human Genome Project was a pioneer for encouraging open access to scientific research. In 1996, those involved agreed that all new information produced should be made freely available to all within 24 hours. Several software developed to help researchers utilizing data.

Open biospecimens Several studies can also provide biospecimens with their datasets. The only cost is the shippment. Examples: ADNI. National Institute of Health (NIH).

Open-Data Repository NIH: https://biolincc.nhlbi.nih.gov/resource_overview/ Human Genome Project: https://www.ncbi.nlm.nih.gov/genome/guide/human/#download Health data: https://www.healthdata.gov/content/about ADNI: http://adni.loni.usc.edu CEO: https://www.ceoroundtableoncancer.org Clinical study: https://clinicalstudydatarequest.com The YODA project: http://yoda.yale.edu The Framingham Heart Study: http://www.framinghamheartstudy.org/index.php UK data: https://discover.ukdataservice.ac.uk/catalogue?sn=8131

Thank You