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Support #1411

Update to #1349: Accessing data with METADAC access

Added by Kevin Brennan 3 months ago. Updated about 1 month ago.

Status:
In Progress
Priority:
Normal
Assignee:
Category:
Data linkage and consents
Start date:
09/15/2020
% Done:

90%


Description

Hi there,

On May 26th I raised issue #1349 to enquire about linking UKHLS genetic and DNA methylation data from the European Genome Phenome Archive, which I had been granted access. These data are stored at EPA under the accession: EGAS00001001232.

As I explained in my last post, the methylation data, EGAD00010001521, is virtually useless as it is provided at EGA, because it cannot be linked
to any other data type. The availability of this data at EPA is therefore misreported.

Anyway, In May, you got back to me and let me know that in order to link the UKHLS DNA methylation Illumina EPIC Array data (EGAD00010001521) to UKHLS imputed GWAS data (EGAD00010000918), I would need to apply for access to the data at METADAC. I have done this and have now been approved for access to the data needed to link these datasets. Dr Stephanie Roberts, Head of METADAC Secretariat, let me know yesterday that she has sent you the notification of approval to Understanding Society.

Can you please let me know how I can now access the data? I have not received any instructions as to how to do this, so I needed to open a new issues. At this point the administrative process to access these 'publicly available' data has taken over a year and has involved emails with at least five people.

Could you please let me know how to access the data now that I have been granted METADATA access?

Best wishes,

Kevin Brennan

#1

Updated by Rebecca Parsons 3 months ago

  • Status changed from New to In Progress
  • Assignee changed from Alita Nandi to Rebecca Parsons
  • % Done changed from 0 to 50
  • Private changed from Yes to No

Hi Kevin,

Once the approval from Metadac has come through the data team at Understanding Society will prepare your dataset and send it to you. The data team have checked, and as of today we haven't heard from Metadac about your application. They'll chase this up today and will prioritise your data when they've got the confirmation.

Best wishes,
Becky

User Support Team

#2

Updated by Kevin Brennan 3 months ago

Thank you.

Please not that while I am the contact person for the projects, the principal applicant is Olivier Gevaert.
The project ID is MDAC-2020-0011-02E-GEVAERT

I have chased up with METADAC to confirm that they have forwarded the notification to you.

Best wishes,

Kevin

#3

Updated by Kevin Brennan 3 months ago

Stephanie Roberts from METADAC has just got back to me, confirming to me that the email was sent to on September 14, 2020 at 12:59.

I am cc'd on this email. Please let me know if it would be helpful for me to forward this email to you.
Stephanie is concerned that METADAC emails are being rejected due to a recent data breach.

Thanks,

Kevin

#4

Updated by Rebecca Parsons 3 months ago

Hi Kevin,

Thanks for the additional information. The data team are checking and if the email from Stephanie isn't there, they'll contact her.

Best wishes,
Becky

#5

Updated by Kevin Brennan 3 months ago

Thank you,

If the team need to contact METADAC, could you please ask the team to cc someone from METADAC apart from Stephanie, as Stephanie has told me that she is on leave.
Joel Minion is the other person I have worked with from METADAC:

Thanks,

Kevin

#6

Updated by Rebecca Parsons 3 months ago

Will do! Thanks,
Becky

#7

Updated by Rebecca Parsons 3 months ago

  • Status changed from In Progress to Feedback
  • Assignee deleted (Rebecca Parsons)
  • % Done changed from 50 to 80

Hi Kevin,

Just to confirm that the data team have received the approval from Metadac and will be in touch with you when the data is ready.

Best wishes,
Becky

User Support Team

#8

Updated by Kevin Brennan 3 months ago

Great, thanks Becky.

Best wishes,

Kevin

#9

Updated by Alita Nandi 2 months ago

  • Assignee set to Kevin Brennan
#10

Updated by Alita Nandi 2 months ago

  • Status changed from Feedback to Resolved
  • % Done changed from 80 to 100
#11

Updated by Kevin Brennan 2 months ago

Hi Alita,

Would it be possible to get contact information for whoever is processing my data. I haven't heard from them yet.

Best wishes,

Kevin

#12

Updated by Alita Nandi 2 months ago

  • Status changed from Resolved to In Progress
  • % Done changed from 100 to 90

Sorry about that Kevin. I have written to the team and waiting to hear back from them.
Best wishes,
Alita

#13

Updated by Kevin Brennan 2 months ago

Thanks

#14

Updated by Kevin Brennan about 2 months ago

Hi Alita,

I still haven't heard from the team. As I have mentioned before, it's been over a year since I first applied for access to this data, so I'm really out of patience with this system. Can you please put me know who I can contact directly about this?

Best wishes,

Kevin

#15

Updated by Kevin Brennan about 1 month ago

Can you please let me know if I and when I will receive this data?

#16

Updated by Alita Nandi about 1 month ago

Hello Kevin - the Metadac team have informed me that they will be emailing you very soon.

#17

Updated by Annette Pasotti about 1 month ago

Dear Kevin

Thank you for your patience. We are establishing with the data team when the data will be ready and will let you know when we hear more.

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