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The following procedures must be completed prior to
providing data to the investigator:
- Submission of a written request for Roster statistical
data, outlining needed data points (this can be done
via email)
- Once written request received, Roster submits request
to HD Advisory Committee for informational purposes
only. Since statistical requests do not require patient
contact, approval from the HD Advisory Committee is
not required.
- Statistics are compiled and sent to the researcher.
- All publications resulting from the provided statistics
must cite the Roster.
The following procedures must be completed prior to
providing subject information to the investigator.
- A formal, written proposal must be submitted which
outlines study design, study purpose, desired outcomes,
and method of data collection with complete example
provided (e.g. proposed questionnaire, phone screen,
etc.) The researcher is responsible for obtaining
local IRB approval of the project and forwarding documentation
of IRB approval to the Roster.
- Upon reception of the formal proposal to our department,
the proposal will be submitted to the HD advisory
committee for review. The HD advisory committee consists
of 7 members (3 National Institutes of Health members,
4 University Members) and unanimous approval must
be obtained in order to authorize use of the HD roster
for subject recruitment.
- Post HD Advisory Committee approval, subject recruitment
letters are sent to the specific subject population
identified for research.
- All interested participant information will be
forwarded on to the researcher.
- All publications resulting from the proposed research
must cite the Roster.
Shelley Burnham, BS
Hereditary Genomics
Health Information and Translational Sciences Building
HS 4000
410 West 10th Street
Indianapolis, IN 46202-3002
Phone: 1.866.818.0213
FAX: 317.274.2387
Email: hdroster@iupui.edu
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