Dear everyone,
Here is related to the second announcement that I said during WMC 2019 Hanoi, "A proposal for a data sharing platform for culture-confirmed melioidosis patients"
(1st - IMN committee election [announced]; 2nd - data sharing platform [this email]; 3rd - Hanoi declaration on melioidosis as a neglected tropical disease [the name is subject to change - we will work on it among committee member first and will inform/consult everyone and ask for endorsement in the future])
********************************************** Short details from the word file attached ******************************************
Objective: To
generate a data sharing platform which will allow researchers to perform
meta-analysis and genetic epidemiology from individual patient data.
Simple
concepts that we would like to propose
1) MORU can be a data centre for this project
at the first stage. Data will be made off-line for security.
2) MORU will not propose to do studies using
meta-data during the first two years.
3) A committee will be set up based on data
contributors (partners) to consider study proposals submitted to use meta-data for
meta-analysis
4) If you want to pass raw data (with Data Transfer
Agreement [DTA]), we can keep raw data for you. If you want to anonymized data
before passing, please make sure that at least study identifiers that can match
with WGS data is kept. MORU will manage the data into a set that can be passed
to ‘investigators’ within the investigator in the network that committee
approves for the study. All will be performed offline.
5) MORU will follow Health Insurance Portability
and Accountability Act (HIPAA) and the General Data Protection Regulation
(GDPR) strictly.
6) We will try to collaborate with IDDO (www.iddo.org) who set up data sharing platform
for malaria and other NTDs, so that we do not re-invent the wheel and can try
to see whether universal protocol of IDDO can be applicable to melioidosis
community.
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The proposal as a document file is attached.
We (Phasith and I) will individually contact investigators and research centres (in the list in the word document file) to ask further how each thinks about this and whether the team would like to pioneer this together.
If your emails or your research centres are not in the list, and you have individual patient data that you think your institutions would be keen to share and join the melioidosis data sharing platform together, please email Phasith and I directly (Pha...@tropmedres.ac and di...@tropmedres.ac).
We are truly aware that this is not easy, and it will be a lot of processes with EC/IRB/DTA and technical discussion among the new committee for data sharing platform (based on those who will contribute data together). We will try to be inclusive as much as possible, but we also balance about possibility and time and resource required as well. We will try to make it happen as we foresee the benefits of this platform for the community.
Kind regards,
Direk
PS.
1. The proposal is aimed for retrospective data. Some standard data dictionary and data unification/transformation will be performed to support meta-analysis.
2. During the discussion of the IMN committee member, we talk about the possibility to generate standard case record forms (tier-based; which means that it can be a minimum data plus optional ones for different settings) and standard data dictionary for a possibility to standardize data that will be prospectively collected between partners in the future.
The standardization of prospective data collection (2&3) can be further explored together in the future, if a platform for retrospective data and sharing committee is born first.
