Form 1 Participant Profile

Confidential
Sickle Cell Test Team 1
Page 1 of 4

Participant Profile
Participant ID

__________________________________
((do not change this value))

OMB Number (0915-XXXX) Expiration date (XX/XX/20XX)
Public Burden Statement: An agency may not conduct or sponsor, and a person is not required to respond to, a
collection of information unless it displays a currently valid OMB control number. The OMB control number for this
project is 0915-XXXX. Public reporting burden for this collection of information is estimated to average ____ hours per
response, including the time for reviewing instructions, searching existing data sources, and completing and reviewing
the collection of information. Send comments regarding this burden estimate or any other aspect of this collection of
information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600 Fishers Lane,
Room 10-29, Rockville, Maryland, 20857.
Legacy Participant ID

__________________________________

Most recent reviewer's initials:

__________________________________

Most recent chart review date:

__________________________________

Status:

Active

Inactive

Demographics
Gender
Year of birth:

Male

Female

Unknown

__________________________________

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Confidential
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State of Residence:

Alabama
Alaska
American Samoa
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Guam
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Northern Marianas Islands
Ohio
Oklahoma
Oregon
Pennsylvania
Puerto Rico
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Virgin Islands
Washington
West Virginia
Wisconsin
Wyoming

Born in U.S.?

Yes

No

Not available

Country of birth:

__________________________________
(if unknown enter "Not available")

Primary care site:

__________________________________

Primary Care Phone:

__________________________________

Hematology Care Site:

__________________________________
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Confidential
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Hematology Care Phone:

__________________________________

Sickle Cell Status
Genotype:

Hemoglobin SS
Hemoglobin SC
Hemoglobin Sbeta zero thalassemia
Hemoglobin Sbeta plus thalassemia
Hemoglobin S variant
Hemoglobin Variant (AV/ FAV, FAO/E, FAD/G)
Sickle cell trait ( AS/FAS)
Hemoglobin C trait (AC/FAC)
Beta thalassemia trait
Other trait
Not available

Was the diagnosis of sickle cell disease/sickle cell
trait made in the past 12 months?

Yes, SCD diagnosed in the past 12 months
Yes, SCT diagnosed in the past 12 months
No

Was the diagnosis of SCD made in the newborn period?

Yes, diagnosis made through newborn screening.
No, diagnosis not made in the newborn period.
Diagnosis made through testing after 1 month of
age.

Date of screening:

__________________________________

Date of testing:

__________________________________

Was the diagnosis of SCT made in the newborn period?

Yes, diagnosis made through newborn screening.
No, diagnosis not made in the newborn period.
Diagnosis made through testing after 1 month of
age.

Date of screening:

__________________________________

Date of testing:

__________________________________

Was confirmatory testing performed?

Yes

No

Not available

Date of confirmatory testing:

__________________________________

Time difference between SCD screening and
confirmatory test dates.

__________________________________
(not for data entry)

Were results given/discussed with parents/caregiver?
Results discussed/given date:
Were the results given/discussed with
patient/parents/caregivers?
Results discussed/given date:
Was genetic counseling provided?

Yes

No

Not available

__________________________________
Yes

No

Not available

__________________________________
Yes

No

Not available

Counseling date:

__________________________________

Time Difference between confirmatory testing and
genetic education dates:

__________________________________
(not for data entry)

Did the newborn have an initial follow-up appointment
with the hematologist?
Follow-up date:

Yes

No

Not available

__________________________________
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Confidential
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Time difference between screening and follow-up dates
Did the patient have an initial follow-up appointment
with a hematologist?

__________________________________
(not for data entry)
Yes

No

Not available

Follow-up date:

__________________________________

Time difference between confirmatory testing and
follow-up dates

__________________________________
(not for data entry)

www.project-redcap.org