Title of concept proposal:
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First name of concept lead:
(The concept lead is the principle investigator on the proposed project. The concept lead serves as the primary point of contact and data steward for the data request)
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Last name of concept lead:
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Country where concept lead is based:
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United States Afghanistan Albania Algeria Andorra Angola Antigua & Deps Argentina Armenia Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bhutan Bolivia Bosnia Herzegovina Botswana Brazil Brunei Bulgaria Burkina Burundi Cambodia Cameroon Canada Cape Verde Central African Rep Chad Chile China Colombia Comoros Congo Congo {Democratic Rep} Costa Rica Croatia Cuba Cyprus Czech Republic Denmark Djibouti Dominica Dominican Republic East Timor Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Fiji Finland France Gabon Gambia Georgia Germany Ghana Greece Grenada Guatemala Guinea Guinea-Bissau Guyana Haiti Honduras Hungary Iceland India Indonesia Iran Iraq Ireland {Republic} Israel Italy Ivory Coast Jamaica Japan Jordan Kazakhstan Kenya Kiribati Korea North Korea South Kosovo Kuwait Kyrgyzstan Laos Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macedonia Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Mauritania Mauritius Mexico Micronesia Moldova Monaco Mongolia Montenegro Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Zealand Nicaragua Niger Nigeria Norway Oman Pakistan Palau Panama Papua New Guinea Paraguay Peru Philippines Poland Portugal Qatar Romania Russian Federation Rwanda St Kitts & Nevis St Lucia Saint Vincent & the Grenadines Samoa San Marino Sao Tome & Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Sudan Spain Sri Lanka Sudan Suriname Swaziland Sweden Switzerland Syria Taiwan Tajikistan Tanzania Thailand Togo Tonga Trinidad & Tobago Tunisia Turkey Turkmenistan Tuvalu Uganda Ukraine United Arab Emirates United Kingdom Uruguay Uzbekistan Vanuatu Vatican City Venezuela Vietnam Yemen Zambia Zimbabwe
Institution:
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Email of Concept Lead:
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or the email address that you want us to use for communication about this project
Collaborators
(please list name, institution, and email address of all collaborators)
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Do you or any of the above requesters hold a leadership position with another registry and/or specialty organization?
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Yes
No
Please list the leadership position of yourself or any collaborators and their registry/organization affiliation
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Abstract:
(100-200 words)
Please note that this Data Request Abstract, if approved, will be posted on the AAD website as part of our continually updated list of in-progress and published work related to the registry.
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Research Question or Hypothesis:
Please synthesize your main research question or hypothesis into NO MORE than one sentence.
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Project Outline:
(Please include a background, objectives, methods and outcomes. The outline can be up to 500 words)
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Anticipated Timeline to Abstract Submission:
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write N/A if there is no plan to submit this research to a conference
Anticipated Timeline to Manuscript Submission:
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write N/A if there is no plan to submit this research to a journal
List the name and credentials (or a short summary of relevant experience) of the person(s) overseeing statistical analysis for your research:
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Statistical Analysis Plan
(100-250 words)
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A list of the registry questions/variables available for request is linked below. Please review the instructions below and on the attached spreadsheet in order to request data.
Please note that some questions were added later on in the study, and some questions include "branching logic" such that not all questions were asked of all participants. Note: The COVID-19 dermatology registry data does include names, professional titles, and email addresses of healthcare professionals who entered the de-identified patient data. However, in order to maintain privacy of those who have entered cases, requests to contact healthcare providers will generally be denied except in particularly relevant cases. Specific dates more specific than year also cannot be shared for compliance reasons. (Please email Karry Su: kasu@mgh.harvard.edu if you have trouble accessing the list through this REDCap form.)
Have you reviewed the list of variables and prepared your request?
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Yes
No
Upload your spreadsheet of requested variables here. Please ensure you have highlighted all variables for which you would like to receive data and saved the document with the initials of the Project Lead/Data Requester before uploading. Please note: request only the variables you need for your analysis. The entire dataset will not be sent.
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Requested Variables:The questions/variables on the PDF are numbered. Select the corresponding numbers of the variables you need for your research.
PLEASE NOTE: To protect the identities of providers who entered cases into the registry, answers to questions 1-4 will not be sent unless there is a specific research need. Only variables which are needed for the analysis should be selected. The entire dataset will NOT be sent.
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Please do not continue with this survey until you have reviewed and selected your variables. You can save this form and return later.
Ethics:
This dataset has been determined not human subjects research by the Partners HealthCare Institutional Review Board. The Partners Healthcare Institutional Review Board does not cover data analysis outside of Partners Healthcare. Therefore, if this data request is approved, the concept lead must contact their own IRB to see if approval is required from their own institution to perform secondary data analysis of de-identified data that is not human subjects. In addition, the recipient needs to obtain a data use agreement at their primary institution to access the data within the COVID-19 dermatology registry.
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Ethics (continued):
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Authorship:
The development, distribution and management of this dataset has been made possible by a number of individuals. If this data request is approved, per ICJME requirements, the concept lead will be made aware of co-authors who must be included on any resulting presentations or publications.
At a minimum, the COVID-19 Dermatology Data Registry Concept Team should be included as co-authors on any publications. If you need additional expertise, the COVID-19 Dermatology Data Governance Workgroup can recommend other members as well. Authorship discussion should be undertaken with leadership of the COVID-19 Database in the early stages of the project.
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Target Presentations:
Are you planning on submitting this concept proposal as an abstract to an upcoming conference?
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Yes
No
Which conference(s) are you planning on submitting this concept proposal to?
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All abstracts, manuscripts, and other materials containing COVID-19 Dermatology Registry data must be submitted to the COVID-19 Dermatology Data Governance Workgroup for review and approval prior to submission for presentation or publication. You will be prompted in a later survey to submit your abstract for review. Please submit any abstracts as soon as possible but absolutely no later than 2 weeks before the conference submission deadline . The more time you allow for the Workgroup to review your submission, the more time you will have to incorporate any requested revisions and submit for final approval.
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Target Journals:
Are you planning on submitting this concept proposal as a manuscript to a journal?
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Yes
No
Which journal(s) are you planning on submitting this concept proposal to?
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All abstracts, manuscripts, and other materials containing COVID-19 Dermatology Registry data must be submitted to the COVID-19 Dermatology Data Governance Workgroup for review and approval prior to submission for presentation or publication. You will be prompted in a later survey to submit your abstract for review. Please submit any abstracts as soon as possible but absolutely no later than 2 weeks before the journal submission deadline . The more time you allow for the Workgroup to review your submission, the more time you will have to incorporate any requested revisions and submit for final approval.
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Submit
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