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Study Detail

Study ID 1011
Name SCDAA - Get Connected Registry
Contact Email whitleyk@email.chop.edu
Acronym SCDAA
Period 2015 -
Design Registry Study
Study PI Kim Smith Whitley
Institution CHOP
URL https://www4.gvtsecure.com/reg_scdaa/
CTGovID NA
Funding Agency SCDAA
Grant Number NA
Overview The "Get Connected" Registry is a patient powered registry designed to create a way patients with sickle cell and sickle cell trait can receive information about current advoacy initiatives, treatments, therapies and research studies.
Focus Areas NA
Outcomes 1. To achieve the mission and support the future of sickle cell-related activities that leverage the infrastructure created by the CureSC Initiative, a robust data registry and repository will be developed. The data registry and repository will serve as:
2. A source for screening patients for studies and outreach,
3. Data management infrastructure for prospective data collection,
4. A metadata catalog of data elements collected in SCD studies, and
5. A platform for investigative analyses of extant datasets.
Data Location SCDAA
Biospecimen Available N/A
Data Consent The data would meet the definition of de-identified by the NIH (no names, home or email addresses, full birthdates, etc). These data would be transferred securely and under a data transfer agreement that assures SCDAA that the data are protected and used only in the manner intended. Periodic updates would be requested by RTI to capture new registrations to Get Connected or updated patient-level de-identified information.
Biospecimen Consent NA
Contact Consent Yes, with permission on consent
Genomic Data No
Age Range 0-99
No. Participants 5000
Inclusion Criteria SCD Diagnosis
Exclusion Criteria NA
Study Documentation
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Forms
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Get Connected Form 2016 Updated SCDAA

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