[Automated] DSW Response: DSH service provision form feedback (285142bc-4fbc-4f50-a652-e80edb3d5869)

[Acb897]

Questionnaire Answers: DSH service provision form feedback

Below are the responses submitted for the questionnaire.

Table of Contents

• Self-Assessment to Join the Virtual Platform Curated Network
• Motivation and Scope
• Data analysis facilities
• Reference datasets
• Objectives of co-creation
• General information on data
• Current status of the data

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Self-Assessment to Join the Virtual Platform Curated Network

Question	Answer
Please provide the name and a brief description of your resource	Resource ABC, brief description
Please provide the URL of your resource	https://my-resource.com
Please provide your contact details (Name, surname, e-mail address, function in the organisation)	Name, surname, myaddress@mail.com, function
Type of resource	Public (academic/institutional)
Essential requirement: Does your resource directly contribute to one or more of ERDERA’s general (GO) or specific (SO) objectives?	- SO5: Integrated multinational & multi-stakeholder R&I ecosystem for rare diseases - GO2: New effective therapies for rare diseases approved in the EU and beyond - GO1: Diagnosis established or enrolment in systematic research in average within 6 months after coming to medical attention (in EU and Associated countries)
Essential requirement: Is your resource dedicated to rare diseases (RD), or does it contain data or services that could be adapted to support RD research?	Unanswered
Has your resource already followed an assessment process?	Unanswered
If you answered 'Yes, via another resource' to the previous question, please specify below:	Unanswered
Is your resource relevant to RD Research?	Unanswered
Would you like to utilise the VP as a platform to enhance the visibility of your resource or enterprise for publicity or commercial purposes?	Unanswered
Is access to your resource governed by clearly defined agreements, such as a Terms of Use?	Unanswered
Is your resource Open Source through a recognised repository (such as GitHub, GitBucket or SourceForge)?	Unanswered
Does your resource follow the FAIR (Findable, Accessible, Interoperable, Reusable) data principles?	Unanswered
Does your resource include established oversight protocols via a Scientific Advisory Body or another similar body?	Unanswered
Is your resource free to use?	Unanswered
Is your resource peer reviewed, for example, by peers, by users, or by independent bodies (such as ELIXIR CDR)	Unanswered
Does your resource include any of the following functionalities / components?	No Choices Selected
If you answered anything other than 'No' in the previous question, please specify your response	Unanswered
How is the technical performance of your resource, if applicable, in terms of average % uptime per month over the last year, or in terms of response time or any other measure?	Unanswered
How is access security managed (ex. using AAI...)?	Unanswered
Regarding the installation of your resource, is it:	Unanswered
Please describe the intuitive interface of your resource in terms of:	Unanswered
Is the command line of your resource modifiable to particular or non-standard requirements?	Unanswered
Is your resource scalable / automatable in that it is interoperable and can be incorporated into a pipeline / workflow?	Unanswered
Are the file formats of you resource:	Unanswered
Clear processing	Unanswered
If you selected 'Other' in the question above, please specify	Unanswered
Please elaborate on the release cycle of you resource and specify if a permanent archive of releases exists	Unanswered
Which kind of support does your resource provide to end-users?	Unanswered
If you selected 'Other' in the question above, please specify	Unanswered
How are issues such as troubleshooting, bug reports, and new feature requests addressed?	Unanswered
How is maintenance governed?	SOPs
Does your resource have any training materials available such as user documentation, webinars etc? Please specify below	training material 1, training material 2...
Is your resource included in a registry?	Registry, findable by...

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Motivation and Scope

Question	Answer
What better defines your needs? (More than one objective can chosen)	Unanswered

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Data analysis facilities

Question	Answer
What's the name of your resource?	Unanswered
What's the contact person for this resource?	Unanswered

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Reference datasets

Question	Answer
What's the name of your resource?	Unanswered
What's the contact person for this resource?	Unanswered

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Objectives of co-creation

Question	Answer
Do you already have analysis goals defined that will benefit from your data being automatically findable, accessible, interoperable, and reusable?	Automatically notify resources that have access to patients with Osteogenesis imperfecta and a specific mutation to join a cohort study. Notify me of the total number of patients.
Have you anticipated a timeline for FAIRification?	Unanswered
Do you have dedicated technical personnel to work on the co-creation process?	Unanswered
Do you have a technical person who is familiar with the data and can meet with the ERDERA FAIRification team weekly or bi-weekly over an estimated 2-3 months?	Unanswered

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General information on data

Question	Answer
As which of the following types of resources would you classify your resource?	Unanswered

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Current status of the data

Question	Answer
Please describe the data that will be used in the co-creation process	Unanswered
What kind(s) of pre-exisiting data do you have?	Unanswered
Do you implement one of these data models?	- None of the above
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Do you implement one of these data exchange standards?	- Phenopackets (https://phenopacket-schema.readthedocs.io/)
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Do you implement any of these metadata models?	Unanswered
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Do you implement any of these data standards?	Unanswered
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Do you implement any of these ontologies/vocabularies?	Unanswered
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Have you implemented a FAIR Data Point?	Unanswered
Do you implement any of these data usage agreement standards?	Unanswered
If you chose "None of the above" for the previous question, please indicate the name and URL of the standard(s) or proprietary exchange mechanisms you have implemented, if any	Unanswered
Did you specify categories of people that are authorised to access different types of data? (choose all that apply)	Unanswered
Do you have an AAI (authorisation and authentication interface) system in place?	Unanswered
Do you have data that can identify individuals?	Unanswered
Is your data available through an API or a query endpoint?	Unanswered
Is your data stored in a centralised repository or distributed across multiple systems?	Unanswered

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