[Natalie Harrower]

I think so many of us are reeling from this loss – it just seems so hard to believe, because Sarah was full to the brim of life and energy and endless generosity amongst colleagues. Thank you Hilary and Ingrid for going to the funeral so that her family will know how much she was admired by the entire community.
Natalie.
___________________
Natalie Harrower, PhD
Executive Director
Canadian Research Data Centre Network (CRDCN)
McMaster University | https://crdcn.ca/
***@***.*** | @natalieharrower
On Jan 4, 2024, at 08:23, Hilary Hanahoe via FAIR Data Maturity Model WG wrote:

Dear Angus and Keith,
Thank you so much Keith for those lovely words. Indeed, as Angus points out, Sarah’s funeral will be at 14:45 UTC / UK time on Friday 5th January.
Warm regards
Hilary
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On Thu, 4 Jan 2024 at 11:40, sangusa via FAIR Data Maturity Model WG wrote:
Hello Keith,
Thank you for the words below about our very sad loss of Sarah. I just wanted to check the time of the funeral, which I believe is 14.45 (UTC) not 15.45.
All the best,
Angus
Dr Angus Whyte
Snr Institutional Support Officer
Digital Curation Centre
University of Edinburgh
From: kgrussell via FAIR Data Maturity Model WG
Date: Wednesday, 3 January 2024 at 23:55
To: ***@***.***-groups.org
Subject: [fair_maturity] In memory of Sarah Jones
This email was sent to you by someone outside the University.
You should only click on links or attachments if you are certain that the email is genuine and the content is safe.
Dear members of the working group,
We were deeply shocked and saddened to learn of the untimely passing of Sarah Jones. She was an amazing person, full of energy and brightness. She was extremely knowledgeable and well connected in the space in which we work.
We had the pleasure of having her as a co-chair of this working group for only a brief period, but before that she already played a significant role in providing input into the FAIR Data Maturity Model whilst we were collecting views from the sector. She provided extremely valuable presentations on EOSC and project activities related to FAIR.
We will miss her dearly, she was a wonderful colleague and a lovely considerate and kind person.
If you wish to share your thoughts and memories of Sarah, please see the post on the RDA website.
https://www.rd-alliance.org/remembering-sarah-jones
You can find the condoleance register on the Geant website through this link:
https://connect.geant.org/2023/12/05/geant-mourns-the-loss-of-sarah-jones
There will be a memorial service for Sarah this Friday the 5th January from Lytham Park Crematorium at 15:45 UTC. This will be live streamed on: https://briandavidfilms.co.uk/channel1
For privacy and security the stream is password protected and the password
for this stream is 3467
Kind regards,
Edit, Shelley, Keith
Co-chairs of the RDA FAIR Data Maturity Model Working Group
Keith Russell
Director Outreach
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[Natalie Harrower]

I think Claire has managed to capture all the key points – I made some minor edits to try and rhetorically clarify our key point (which is ‘good example in bioinformatics’ AND this is wider’ (vs ‘Good example in biometrics, you missed that this is wider’).
I don’t think I can make the sprint tomorrow, but I added a note about FAIRER – I believe it should be kept as FAIR – this has been discussed before in the WG and the decision was to not extend it to FAIRER.
Best,
Natalie
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Dr. Natalie Harrower
Director, Digital Repository of Ireland
Royal Irish Academy
***@***.*** | @natalieharrower
http://www.dri.ie | @dri_ireland
RDA COVID-19 Working Group
European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 24 Mar 2021, at 09:46, cambonthomsen via RDA COVID19 Coordination wrote:
I have proposed a modification of the last paragraph of the short version made by Claire. Not sure I can be persent for the next sprint.
Anne
Le 23/03/2021 à 19:19, muhlmansiek via RDA COVID19 Coordination a écrit :
All,
The commentary is progressing, and it looks like we will need at least one more meeting to get it finalized and in the required format for submission to Nature. Of note, a Correspondence submission only allows for 250 words, so the draft may have to be shortened significantly.
We are aiming for a meeting on Thursday; if interested in joining, please indicate your availability here: https://doodle.com/poll/vz2zpuybhp7nn5d2?utm_source=poll&utm_medium=link
Thanks and regards,
Mary
From: on behalf of muhlmansiek via RDA COVID19 Coordination
Reply-To: Mary O’Brien Uhlmansiek
Date: Friday, March 19, 2021 at 07:28
To: RDA COVID19 Coordination , Zoe Cournia , “***@***.***”
Subject: [rdacovid19-coordination] Update on response to Nature commentary
Dear all,
The group has made tremendous progress on the response to the recent Nature article, and hopes to finalize it early next week. I’ve sent out an invitation for a writing sprint on Monday, 22 March at 11:00 UTC if you are able to join. Here is the link to the draft if you’d like to provide comments/suggestions: https://docs.google.com/document/d/1tWEz_N–b4gqU2wD7jSj2E8KVTCfLvsoQ4ai…
Thanks again for all of your time and effort on this initiative, and have a great weekend.
Best,
Mary
Mary O’Brien Uhlmansiek, MA
Director, Implementation & Outreach
Research Data Alliance – US/RA
Member, RDA Secretariat
https://www.rd-alliance.org
ORCID: 0000-0002-7949-2057
Skype: maryuhlmansiek
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RDA 17th Plenary Meeting, April 2021, Edinburgh, Scotland – see updates
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[Natalie Harrower]

HI Mary, I put what I could think of in there and left a note at the end about the poster.
Cheers
Natalie
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_________________
Dr. Natalie Harrower
Director, Digital Repository of Ireland
Royal Irish Academy
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RDA COVID-19 Working Group
European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 25 Jan 2021, at 15:24, muhlmansiek via RDA COVID19 Coordination wrote:
Dear RDA COVID-19 Co-chairs and moderators,
To inform our response to reviewer’s questions on the Wellcome COVID-19 summary/dissemination paper, we are asking for your input. Can you please let us know of any RDA COVID-19 WG related follow-up or spinoff activities that your group may have participated in or completed? Here are the activities we are interested in for this reporting (with links to each section of the reporting document):
* RDA work groups, interest groups, or community of practice groups
* Peer reviewed articles (published or submitted)
* Preprints (published on a preprint server)
* Grant applications (submitted)
* Conference presentations
* Webinars
The link to the overall document for reporting this information is: https://docs.google.com/document/d/1a3fP_c1i1Opi-f1YQvRa9YkBOx5c_LbkFS0f…
We ask you to kindly provide information by Mon, 1 February, if at all possible. Please let me or Hugh Shanahan know if you have any questions at all.
Thanks and regards,
Mary
Mary O’Brien Uhlmansiek, MA
Director, Implementation & Outreach
Research Data Alliance – US/RA
Member, RDA Secretariat
https://www.rd-alliance.org
ORCID: 0000-0002-7949-2057
Skype: maryuhlmansiek
___________________________________________________________________________________
RDA 17th Plenary Meeting, April 2021, Edinburgh, Scotland – see updates
IDW2021 (co-organised by RDA, CODATA and WDS and incorporates 18th RDA Plenary Meeting), 8-11 November 2021, Seoul, Republic of Korea – see updates
IDW2023 (co-organised by RDA, CODATA and WDS and incorporating the RDA Plenary Meeting), 23-26 October 2023, Salzburg, Austria – see updates
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[Natalie Harrower]

Hi all,
Agreed, unless the Infectious Diseases BOF was meant to cover all of this? Here’s a few things we can discuss on email, and maybe someone can start a Google doc? I have another deadline today so I can circle back later.
I note this:
Note, submissions for Working/Interest Group sessions and Joint Meetings are accepted from group chairs only. For joint meetings, all group chairs need to be notified prior to submission.
For submission we need to determine the following:
Session Title
Session Abstract (meeting objectives)
Meeting Presenters
Meeting Agenda
Target Audience
About the Group: Group chair serving as contact person; brief intro describing the scope and activities of the group; short group status
Type of meeting (Informative vs Working)
And groups to avoid scheduling conflicts with (eg the new Infectious diseases one)
Information on how to hold the session – prerecorded, live, multiple times to accommodate different time zones
Which preferred plenary slot (Sessions 1 through 8)
To get the conversation going:
First question is what would we want to accomplish? We could make it an informative meeting, but I think there are things we could work on, such as how we might maintain these recs and guidelines going forward, what other outputs could emerge from them (in addition to the papers, tools already being worked on), creation of case studies of their implementation, etc. If we went in this direction, the ‘Type of meeting’ could be ‘Working’ and the objectives could include presenting the work, presenting additional outputs, framework for adoptions, plan for maintenance, etc.
Natalie
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Read our statement on ‘Playing Our Part during COVID-19’
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Director, Digital Repository of Ireland
Royal Irish Academy
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RDA COVID-19 Working Group
European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 4 Aug 2020, at 03:01, kheerand via RDA COVID19 Coordination wrote:
Hi Mark,
Agree, we should schedule one for the Plenary.
Regards
Kheeran
On Tue, Aug 4, 2020 at 1:10 AM mleggott via RDA COVID19 Coordination wrote:
I believe this one slipped through the cracks, as there is no coordination that I am aware of.
I know Priyanka is submitting a proposal for an “Infectious Disease Community of Practice”, which is a new designation that RDA is just in the early stages of defining. I have CC’d Priyanka, as I can’t remember if we had discussed a COVID-19 WG submission along with this.
We should make sure that we do submit a WG session for P16, and I am happy to help facilitate if one has not yet been drafted.
Claire – let me know where you are on this and what I can do to help.
—
Mark
From: Claire Austin
Date: Monday, August 3, 2020 at 11:03
To: RDA COVID-19 Co-Chairs and Moderators
Cc: Rajni Nagrani , Mary De Silva , Bridget Walker , Mar k Leggott
Subject: Session proposal for November Plenary – Deadline tomorrow (Tuesday)
Hello everyone,
Is there an RDA-COVID19-WG submission for the November (virtual) Plenary – deadline for submission tomorrow?
Is each sub-WG submitting separate session proposals, or is there some kind of coordination?
Please accept my apologies if I’ve missed relevant emails about this.
Cheers,
Claire
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[Natalie Harrower]

Thanks Claire. The DOI has changed for the new release of the main doc. It is
https://doi.org/10.15497/rda00052
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Dr. Natalie Harrower
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Royal Irish Academy
***@***.*** | @natalieharrower
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RDA COVID-19 Working Group
European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 30 Jun 2020, at 12:44, caustin via RDA COVID19 Coordination wrote:
Hello everyone,
Below are the citations for the various RDA-COVID19 outputs. Please let me know if you see any issues.
Citation for the RDA-COVID19-WG overarching document:
RDA-COVID19-WG (2020). Recommendations and guidelines, Version 1.0. Research Data Alliance.https://doi.org/10.15497/rda00046
Citation for the RDA-COVID19 Zotero Library supporting output:
RDA-COVID19 Zotero WG (2020). RDA-COVID19 Zotero Library, Version 1.0. Research Data Alliance.https://doi.org/10.15497/rda00051
Citation for the RDA-COVID19-Epidemiology supporting output:
RDA-COVID19-Epidemiology WG (2020). Data sharing in epidemiology (version 0.053). Research Data Alliance.https://doi.org/10.15497/rda00049
Citations for each of the papers found in the RDA-COVID19-Epidemiology WG supporting output annexes:
Austin, C. C., Widyastuti, A.; and the RDA-COVID19-WG (2020). COVID-19 Population level data sources: Review and analysis. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Greenfield, J., Nagrani, R., Sears, M., Austin, C. C.; and the RDA-COVID19-WG (2020). A Full Spectrum View of the COVID-19 data domain: An Epidemiological Data Model. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Greenfield, J., Sears, M., Nagrani, R., Mazzaferro, G., Widyastuti, A., Austin, C. C.; and the RDA-COVID19-WG (2020). Common Data Models and Full Spectrum Epidemiology: Epi-STACK architecture for COVID-19 epidemiology datasets. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Greenfield, J., Tonnang, E. Z., Mazzaferro, G., Austin, C. C.; and the RDA-COVID19-WG. (2020) Epi-TRACS: Rapid detection and whole system response for emerging pathogens such as SARS-CoV-2 virus and the COVID-19 disease that it causes. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Sauermann, S., Kanjala, C., Templ, M.; and the RDA-COVID19-WG. (2020) Preservation of individuals’ privacy in shared COVID-19 related data. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Schmidt, C. O., Nagrani, R., Stange, C., Löbe, M., Zeleke, A., Fabre, G., Koleva, S., Fabre, G., Sauermann, S., Greenfield, J., Austin, C. C.; and the RDA-COVID19-WG (2020). COVID-19 questionnaires, surveys, and item-banks: Overview of clinical- and population-based instruments. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
Tonnang, E. Z., Greenfield, J., Mazzaferro, G., Austin, C. C.; and the RDA-COVID19-WG (2020). COVID-19 Emergency public health and economic measures causal loops: A computable framework. In COVID-19 Data sharing in epidemiology, version 0.053. Research Data Alliance RDA-COVID19-Epidemiology WG. https://doi.org/10.15497/rda00049
The DOIs for future versions of the above papers will not change except in cases where the papers may be submitted to a pre-print server or accepted by a peer review journal.
Cheers,
Claire
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[Natalie Harrower]

Dear Claire,
Thanks for this feedback.
The Editorial Team discussed it today, and the expectation (also by the CoChairs) is few people will read the entire document – they instead will focus on the area relevant to them. For this reason, there remain some statements that occur in more than one place, because they are necessary for the cohesion of a given section.
The development of the visualisation tool/navigation tool will aid discovery through the larger document.
All the best,
Natalie
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Director, Digital Repository of Ireland
Royal Irish Academy
***@***.*** | @natalieharrower
http://www.dri.ie | @dri_ireland
RDA COVID-19 Working Group
European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 4 Jun 2020, at 14:23, caustin via RDA COVID19 Coordination wrote:
Hello everyone,
All of the sub-WG’s have done an amazing job in developing incredibly useful contributions in their respective chapters, and the editorial team has done a herculean task of pulling it all together in just a few days. We are all very appreciative of the work that everyone has been able to accomplish in an impossibly short period of time.
I have also received a lot of feedback that the document is far too long. I agree.
It is very, very difficult to read this document, mostly because of the constant repetition. Nothing should be stated more than once in the document.
Shorter is better.
Longer buries all of the incredibly valuable information that is provided, and severely reduces the potential impact of the document.
* The document should be a maximum 10-15 pages, including a 1/2 to 1-page executive summary and objectives (excluding references, glossary, list of contributors, annexes). Some suggestions to easily achieve this:
* Edit across the entire document to remove all repetition;
* Edit across the entire document to remove verbiage;
* The executive summary should motivate the reader to want to read the rest of the document. The executive summary should be all original text, and not repeat anything that is written later in the body of the document.
* Move all the detailed material to annexes or supporting outputs;
* Move all text the lends itself to being displayed in a table (e.g., in 4.4), into a table. If the Table is long, move it to an annex, leaving a short summary table in the body of the document;
* Provide only chapter headings in the Table of Contents;
* Shorten Objectives of the document and move into in the 1/2 to 1-page executive summary;
* Rename the chapter ‘foundational elements’, ‘cross-cutting elements’, and pull everything out of the subWG chapters into this chapter that cuts across all themes. Shorten the text drastically where a reference can be provided that explains the concept, etc.;
* Merge overlapping themes into one of the chapters (e.g., move privacy in chp 5 to chp 10);
* Remove all ambiguous and fence-sitting language (e.g., “should,” “if possible,” etc.); and,
Thank you once again, for all of your incredible hard work that has produced such an amazing document, and keep the strength to continue.
Cheers,
Claire
– Show quoted text -From: ***@***.***-groups.org on behalf of Bridget Walker via RDA COVID19 Coordination
Sent: June 4, 2020 4:21 AM
To: ***@***.***-groups.org
Subject: [rdacovid19-coordination] Comments on 5th Release Received – Prof. Phil Robinson
Dear all
The comments below were received and forwarded to me from Stefanie Kethers at ARDC.
Bridget
I am not an RDA member, but thought I’d send very brief top-down comments.
Sorry, but the whole 124 page document is too long for my available time. I did read the Exec Summary. This is a good effort overall. Most of the things listed here have already been happening for months now across the board. However I have no idea who might be holding back, and if this will prompt them, so this concept is good. Just might be late to the party I think, but a solid effort. There is still a long way to go to share the raw data tho.
Here is my initial viewpoint, assuming that the rest of the document is really good. From my perspective, this document, like so much current thinking, seems to ignore the whole drug discovery efforts. The massive work happening before anything first hits the patient. It does not seem to measure the progress of vaccine development either. Except for ‘omics’, the document seems to start only when the drug or vaccine hits the patient. There are huge numbers (1000s) of posts on bioRxiv and medRxiv in this target development space in 3 months. Unless I missed it in my brief skimming, the RDA document has a whole section on OMICS, but none on this massive part of the effort seems to be included (molecular and cell biology or pharmacology or medicinal chemistry are not omics). It seems unbalanced in this regard. Of what use is much (certainly not all) of the rest of the RDA guides if people don’t share which drugs or vaccines or molecular targets are looking promising, before hitting clinical trials? Not just after. Share the promising targets or approaches being revealed, as well as the dead-ends? As an example, a few papers posted on papers on bioRxiv and medRxiv have impacted on my thinking and drug development effort, sometimes just from the anecdotal discussion within some.
The RDA document also feels a little anti-IP. If so, I think could be counter-productive in part (I did not check this point in detail in the 124 pager, might have misunderstood). IP is a tool to further incentivise researchers and companies that actually manufacture and deliver products. Otherwise, valuable things may not get developed or even marketed at all. The counter view that IP can be an impediment is very real, but I think it is something to watch out for, not to discourage.
My apologies if some of my comments are off the mark. I am sending only in the spirit of constructivism and our common aim of public good.
Phil
Professor Phil Robinson, BSc (Hons), PhD
Head of Cell Signalling Unit, Children’s Medical Research Institute, The University of Sydney
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[Natalie Harrower]

HI Anne, Claire, all-
Thanks for this discussion. A few of us on the Editorial team discussed it this morning and we agree that an explanation at the top, along the lines of what you suggested Anne and what Claire added, is important to include. The glossary includes source of definition now.
So we’ll come up with wording that incorporates this:
At least, since it would be difficult to come to a consensus on all definitions, we would suggest an introductory sentence in the Glossary that makes clear that the Glossary is only aimed at helping the reader in understanding the meaning of terms used in the document, but does not represent a consensus of the WG on the best definition among the many used for several terms.
And this:
we should make it clear that (1) there is no attempt to necessarily include all, or even the most important alternative definitions; and, (2) the only purpose of the glossary is to clarify the intended meaning of terms that are used in the glossary.
And then perhaps for the final publication we can work on improving this:
It is difficult to see the logic or process to choose definitions for the moment in one source or another; is there a rule, a hierarchy (for ex are they mainly legal definitions, international insitutions one, community validated; many are US oriented and do not correspond for example to European official definitions, s
I hope this is a suitable compromise forward for now!
Natalie
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On 28 May 2020, at 00:06, caustin via RDA COVID19 Coordination wrote:
Different definitions for the same term frequently occur across domains and across jurisdictions. In such cases, it is important to indicate which definition is being relied upon in the document without implying or making a recommendation that that definition is the better, more accurate, or preferred definition. When we are aware of multiple definitions for the same term, it would be useful to include these in the glossary. However, we should make it clear that (1) there is no attempt to necessarily include all, or even the most important alternative definitions; and, (2) the only purpose of the glossary is to clarify the intended meaning of terms that are used in the glossary.
Cheers,
Claire
Sent from my iPhone
On May 27, 2020, at 6:29 PM, cambonthomsen via RDA COVID19 Coordination wrote:

Hello Robyn (taking care of glossary) and all coordination group colleagues
We had a discussion in the clinical group about the glossary; we had concentrated on the terms to be defined so far; the remark is now about the definitions themselves; in many instances they are definitions taken from US sources and are not “consensus definitions”; for example for clinical trials, as remarked by European co-moderators in the clinical group, Sergio Bonini and Christian Ohmann, there is a “legal” definition at EU level that at the same time is more precise and broader (cover several kinds of trials) than that reported in the glossary for the moment. Being in agreement onthe list of terms to define is achieved, considering which definition(s) to choose is another task that would require probably more time.
In the legal-ethical group work on the glossary is planned for next week
At least, since it would be difficult to come to a consensus on all definitions, we would suggest an introductory sentence in the Glossary that makes clear that the Glossary is only aimed at helping the reader in understanding the meaning of terms used in the document, but does not represent a consensus of the WG on the best definition among the many used for several terms.
It is difficult to see the logic or process to choose definitions for the moment in one source or another; is there a rule, a hierarchy (for ex are they mainly legal definitions, international insitutions one, community validated; many are US oriented and do not correspond for example to European official definitions, some of them being defined in European law like clinical trial see below :
Currently in the glossary it is defined as “Another name for an interventional study” whereas the definition given in the EU Regulation on clinical trial is :
‘Clinical trial’ means a clinical study which fulfills any of the following conditions: (a) the assignment of the subject to a particular therapeutic strategy is decided in advance and does not fall within normal clinical practice (of the Member State concerned); (b) the decision to prescribe the investigational medicinal products is taken together with the decision to include the subject in the clinical study; or (c) diagnostic or monitoring procedures in addition to normal clinical practice are applied to the subjects. Clinical Trial Regulation N.536/2014
https://ec.europa.eu/health//sites/health/files/files/eudralex/vol-1/reg…
The regulation also includes other definitions for clinical studies.
Another example is Compassionate use : In the glossary it is defined as “A way to provide an investigational therapy to a patient who is not eligible to receive that therapy in a clinical trial…”.
the European Medicine Agency defines it as follows : “
” Compassionate use is a treatment option that allows the use of an unauthorised medicine. Under strict conditions, products in development can be made available to groups of patients who have a disease with no satisfactory authorised therapies and who cannot enter clinical trials.”
https://www.ema.europa.eu/en/human-regulatory/research-development/compa…
So, how do we proceed? Thanks in advance for your views
Anne
——– Message transféré ——–
Sujet : RDA 5th Revision
Date : Wed, 27 May 2020 19:21:53 +0200
De : Sergio Bonini
Pour : Anne Cambon-Thomsen , Lin, Dawei (NIH/NIAID) [E] , ***@***.***-duesseldorf.de, Jackson-Dipina, Andrea (NIH/OD) [E]
Dear all,
I enclose for Dawei a revised list of resources. I have done my best to include, in the short time available, the most relevant resources selected by me and Christian for the two Google documents. Added resources are marked in red. The list should be completed by Imaging resources. Christian, please have a look if I forgot something (unfortunately I had to confine to the main link all ECRIN resources).
With reference to Glossary, Anne please find enclosed the definition of clinical trials in Europe, according to the recent regulation.
‘Clinical trial’ means a clinical study which fulfills any of the following conditions: (a) the assignment of the subject to a particular therapeutic strategy is decided in advance and does not fall within normal clinical practice of the Member State concerned; (b) the decision to prescribe the investigational medicinal products is taken together with the decision to include the subject in the clinical study; or (c) diagnostic or monitoring procedures in addition to normal clinical practice are applied to the subjects. Clinical Trial Regulation N.536/2014
https://ec.europa.eu/health//sites/health/files/files/eudralex/vol-1/reg…
The regulation also includes other definitions for clinical studies.
I had a look at the Glossary and I have some doubts also about some other definitions, as for instance :
Compassionate use. Defined as “A way to provide an investigational therapy to a patient who is not eligible to receive that therapy in a clinical trial…”.
The Ema gives a different definition ” Compassionate use is a treatment option that allows the use of an unauthorised medicine. Under strict conditions, products in development can be made available to groups of patients who have a disease with no satisfactory authorised therapies and who cannot enter clinical trials.”
https://www.ema.europa.eu/en/human-regulatory/research-development/compa…
Although there is a reference for each definition, most of them are US-oriented. Definitions are always a problem and may represent a reason for criticisms.
Since it would be difficult to come to a consensus on all definitions, I would suggest an introductory sentence in the Glossary that makes clear that the Glossary is only aimed at helping the reader in understanding the meaning of terms used in the document, but does not represent a consensus of the WG on the best definition among the many used for several terms.
Best
Sergio
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[Natalie Harrower]

Hi Rob,
Please add using the comment function at the start of the Reference list and give a bit of information so they pop out to us.
Hoping to discuss this and other related things with the editorial reps today.
Natalie
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On 20 May 2020, at 08:02, Rob Hooft via RDA COVID19 Coordination wrote:
Dear all,
In the OMICS group some resources were identified that are very generic portals to information and/or data on Covid-19. Should the document point to these? Will the editorial team take care of that?
Examples are:
https://scanmail.trustwave.com/?c=17268&d=ndbE3nlYq8j87-T3gkcvPf7FawDe3S…
http://scanmail.trustwave.com/?c=17268&d=ndbE3nlYq8j87-T3gkcvPf7FawDe3Sb…
Potentially also:
https://scanmail.trustwave.com/?c=17268&d=ndbE3nlYq8j87-T3gkcvPf7FawDe3S…
And there are more of these portals: national, institutional and otherwise mandated or unmandated.
I see a link to the covid19dataportal in the References, but I did not find where it was cited in the text.
Rob
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[Natalie Harrower]

Dear Coordinators,
Further to Friday’s email, here is the link to the shared google doc for making updates to the 5th/final draft release:
https://drive.google.com/open?id=1JrPVYpDlLwFtELhotwmW71No5LJ0Q9EISdBsxf…
I recognise that having everyone work in the same document may be challenging, however we all at this stage need to be thinking about how the various parts fit together.
If you haven’t already named one representative from your subgroup who will be responsible for dealing with editorial/style questions, language choices, potential contributions to a glossary, etc., then please put their name in this table:
https://docs.google.com/document/d/10nvye19Vc–NsMeyjUFqn5M_Lskaxgg8Vz5u…
Thanks all,
Natalie
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RDA COVID-19 Working Group
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On 15 May 2020, at 18:10, Natalie Harrower wrote:
Dear Coordinators—
Now that the 4th release is online (congratulations everyone, the effort and coordination is mind blowing), we’re thinking about the 5th release. As a reminder, the deadline for section updates is 21 May at 22UTC.
The Editorial Team had an extensive trawl through the full document, and has identified a number of issues/next steps that we will bring to Tuesday’s CoChairs/Moderators call.
For now, a few observations/practices to note, in case anyone is working on their sections before the Tuesday call.
1. We plan for there to be a single google document that everyone will work from going forward (no more assembling from separate google docs).
2. As with today’s release, references for 5th release will be listed alphabetically in one section at the end of the document. The list will be populated by pulling items tagged *CITEDresource in Zotero. If you cite something in the document but have not tagged it in Zotero, it will not appear in the document. Now is the chance to look at the 4th release to see where you need to update Zotero.
3. We’ve had a number of questions about appropriate length for a section. We are hesitant to state a limit, but underline that this document should be concise, with larger outputs released separately. We can note the following stats on existing section page length: mean=7, mode=7, average=10
4. Looking through your entire section, try to clarify who your audience is. Recommendations are meant to be high level, to funders and policy makers. Guidelines more actionable, to researchers. This is uneven when we look across the entire document, but we are very conscious you had only a small amount of time to adjust during this round. You may also have additional audiences, so in these cases try to clarify in your writing who you are addressing on a particular point.
5. We have found lots of good text in your introductory parts that would enrich the articulation of foundational recommendations at the beginning, so note that we hope to move some of these pieces for the 5th release, especially if they address overarching issues.
6. Please (for our sanity!) do not change the heading structure or introduce different heading styles into the document – this alters the single structure and takes a lot of work to undo!
More detail and discussion on Tuesday!
Have a great weekend all and thanks for the tremendous ongoing work.
Natalie
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[Natalie Harrower]

Dear Anne, Alexander and Brian,
Thanks for your suggestion – the document will definitely benefit from this kind of overarching review and revision.
Just to clarify so we can consider how this might impact timeline, did you mean you will work through it on Friday after it has been released, so that your changes can be incorporated into the 5th release? Or were you looking to get those changes into the 4th release itself? The latter may be difficult as Friday’s timeline is already tight, but let us know what you propose.
Many thanks,
Natalie
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RDA COVID-19 Working Group
European Commission FAIR data expert group
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On 13 May 2020, at 22:13, JBrianP via RDA COVID19 Coordination wrote:
Dear All,
Given the timeline for the different workgroups to complete the current and final iteration of their documents, the Legal and Ethics subgroup are proposing to work through the document once available on Friday. The idea would be to identify and clarify any potentially contradictory guidance on legal and ethics in the individual sections.
Although many of us work in other subgroups too and so are aware of issues being raised in those groups, we thought this would be the best way to ensure consistency in a final version of the RDA document.
We hope this is acceptable and helpful to the editorial team
Anne, Alexander and Brian
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[Natalie Harrower]

Thanks for this Claire – I managed to squeeze a reference to this into s 3.2.3 of the 3rd release, but it might need revisiting.
Best
Natalie
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European Commission FAIR data expert group
European Open Science Cloud (EOSC) FAIR working group
On 8 May 2020, at 20:11, caustin via RDA-COVID19 wrote:
From: HERTERICH Patricia

Date: May 8, 2020 at 6:15:25 AM EDT
To: “***@***.***”
Subject: Record keeping and preservation in a crisis
Reply-To: Research Data Management discussion list
Dear colleagues,
You might be interested in the joint statement by the DPC, International Council on Archives, International Council of Information Commissioners, ARMA, CODATA, Research Data Alliance, UNESCO and the World Data System below. Translations in French and Spanish are available on the webpage at https://www.dpconline.org/news/the-duty-to-document-covid
Please share this message with senior executives in your institutions, professional bodies and opinion formers within your own domain as well as any other relevant channels.
With best wishes,
Patricia
Patricia Herterich
Research Data Specialist
Digital Curation Centre
University of Edinburgh
Pronouns: she/her
Email : ***@***.***
Twitter: @pherterich

https://orcid.org/0000-0002-4542-9906
Currently working remotely – stay healthy and safe!
——
https://www.dpconline.org/news/the-duty-to-document-covid
COVID-19: The duty to document does not cease in a crisis, it becomes more essential.
We, the signatories of this statement, call on governments, businesses, and research institutions around the world to document their decisions and transactions now and for the future.
Building on the UNESCO communique ‘Turning the threat of COVID-19 into an opportunity for greater support to documentary heritage’ and reinforcing the call that decision-makers in the public and private sectors recognise the value of records management and archives, the statement has three calls to action:
Decisions must be documented
Sound records management is more important than ever with governments taking unprecedented steps to deal with the COVID-19 pandemic.
Important decisions are being made by governments involving huge interventions in markets, healthcare and the daily lives of billions of people as they seek to secure the social, economic and cultural wellbeing of their populations and uphold the rule of law.
The pandemic is showing the benefits of access to large and small scale data to inform decision-making, but this does not reduce the need to contextualise records (i.e. paper documents, data, algorithms, code, audio-visual), nor does it exempt governments from documenting their data analysis processes or capturing critical information.
It is essential that the basis of those decisions, the decisions themselves and the senior decision-makers involved are thoroughly documented in order for governments to remain accountable both during and after the emergency and for future generations to be able to learn from our actions.
In these current circumstances, records may be at risk as new ways of working are rapidly adopted without the usual processes and infrastructure.
Urgent steps should be taken to address recordkeeping in ephemeral technologies that have to be deployed rapidly.
Records and data should be secured and preserved in all sectors
The duty to document does not only rest with governments, but also with commercial, research and educational institutions.
The impacts of the pandemic will be far reaching, and all organisations need to be cognisant of the importance of proper data and records management. Commercial entities will need essential records to be maintained for the continuity of operations, to evidence rights and entitlements, but also to be able to apply for government subsidies.
Research and educational institutions, especially those involved in tracing the disease, mapping and analysing the pathogen’s genome to develop vaccines, must ensure that their records and data are accurate and properly maintained.
The existence of proper documentation practices will enable not only business continuity, research and innovation, but also the evidence of how this crisis was managed for future generations. Archives are the custodians of the 1918 influenza pandemic records, which are being studied by scientists around the world and these institutions will eventually be the stewards for records related to the COVID-19 pandemic.
The economic and societal impact of the current pandemic needs to be evidenced, not only to prevent and/or anticipate similar events but to understand the effect this event will have on current and future generations.
The security, preservation and access to digital content should be facilitated during the shutdown
The ability to study the COVID-19 pandemic, in order to prevent other such events, requires the existence of records management services and archives, otherwise records and data will not be generated and captured in ways that will enable their preservation and access, now or in the future. Records and archives are more than paper documents marked ‘official record’ – records and recordkeepers deal with increasingly complex digital materials such as algorithms and rough or raw data.
As the economic impact of COVID-19 is felt around the world, it will also be critical to secure, capture and preserve the records of defunct companies and/or private entities. This way, the social, cultural and even economic significance of former undertakings can live on.
Just as it is essential to have global agreements on reporting standards, specifications and definitions (as in the Sendai Framework), so it is necessary for archives to be recognised and resourced as the custodians of the raw data that underpins composite data or reported information. The duty to document this information does not cease in a crisis, it becomes more essential than ever.
ICA, ICIC, ARMA, CODATA, DPC, RDA, UNESCO MoW, WDS
May 2020
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[Natalie Harrower]

Thanks Timea, this will make it into the release.
Natalie
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European Commission FAIR data expert group
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On 8 May 2020, at 10:20, TimeaBiro via RDA COVID19 Coordination wrote:
Dear Mark, all,
Please find the contribution from the community participation subgroup athttps://docs.google.com/document/d/1mVVrCvHlDbFC_q0MNJ9EeU0-OZxsdBTUr0zO…
We hope we are still in time for the inclusion in today’s release.
We have kept the list of contributors at the top of the document but understand if this cannot be included at this point. If there will be a consistent approach to this across all the subgroups, we will adopt that.
Many thanks to all,
Timea
on behalf of the subgroup co-moderators
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From: Timea Biro
Date: Friday 24 April 2020 at 01:04
To: “***@***.***-groups.org” , ‘Mark Leggott’
Subject: Re: RDA-COVID-19 Community participation sub-group initial recommendations – writing sprint
Dear all,
Please find the initial contribution from the Community participation subgroup in attachment and at the following linkhttps://docs.google.com/document/d/1Bt2JCH_fzZgcT2nDt6dKXu69byzNqWOGcHuf…
We thank you all for the valuable contributions and look forward to the future iterations.
Kind regards,
Timea
on behalf of the subgroup co-moderators
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From: Timea Biro
Date: Thursday 23 April 2020 at 14:24
To: “***@***.***-groups.org”
Subject: RDA-COVID-19 Community participation sub-group initial recommendations – writing sprint
Dear all,
We are having an ad-hoc writing sprint for the initial version of the sub-group recommendations and we have created a new document that shall serve for drafting.
Still quite unstructured, but there is an ongoing coordination call, and we will have several people working in this doc over the next few hours: https://docs.google.com/document/d/1YesQSyWeiGGwvkfaTlJEgGOZ6xTK0yVRCd_Q…
We welcome all contributions.
Many thanks
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Attached files:
RDA_COVID-19_Community_Participation_WG_UseCase_V1_08052020.pdf
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[Natalie Harrower]

Thanks Clare this is excellent. I will draw on it when I talk to the ‘overarching’ group today, with the proviso that deadline is end of day.
Best
Natalie
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On 23 Apr 2020, at 06:38, Claire Austin wrote:
Hello colleagues,
I have drafted an initial 2-page summary for your review and input (deadline, Thursday, April 23):
1. Please make any necessary edits (changes, corrections, additions, deletions), but keep within the maximum 2-page limit.
2. The references listed are those that are tagged as “key resources” in the Zotero Library.
* Please add any other resources that you feel should be highlighted as a key resource for this 1st release; and,
* Add a comment beside any resources that you feel could be removed at this time.
3. This 2-page summary will be integrated into the 1st public release of the overarching RDA-COVID19 WG document on Friday, April 24.
Thank you for all of your efforts and wonderful collaboration,
Cheers,
Claire
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[Natalie Harrower]

Hi all,
I am not able to make the meeting today as I have a conflicting workshop for the EOSC FAIR working group, but I suggest that the question around FAIR in the ‘Writing Sprint’ doc needs to be addressed. I agree FAIR is the goal, but I think we need to recommend very concrete, specific, and simple guidelines so that data is shared in useful ways immediately, and not held back until it’s fully FAIR. I’ve said as much in the document, but wanted to note that I would make this point today if I could join the call!
Natalie
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Dr. Natalie Harrower
Director, Digital Repository of Ireland
Royal Irish Academy
***@***.*** | @natalieharrower
http://www.dri.ie | @dri_ireland
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