Appendix B Measure Bank

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
ED1

ED2

Question/s on REDCap
Acute Care Visit Form: (1) Date/time of registration
(2) Date/time of triage (3) Time from registration to
triage

Acute Care Visit Form: (1) Date/time of triage (2)
Date/Time of initial pain assessment

Operational Definition
(Numerator & Denominator or other)
Mean in minutes of the interval from registration to triage for SCD
patients presenting at the ED during the measurement month.

Measure

Average time from registration to triage for
SCD patients presenting at the ED

NOTES:
• If a patient presented more than once during the measurement month,
count
the most
recent
encounter
• ED
Numerator:
Count
of SCD
patients who presented with pain at the
Percent of SCD patients presenting at the ED
during the measurement month whose pain was assessed within 30
with acute pain who received an initial pain
minutes of triage
assessment within 30 minutes of triage
Denominator: Count of SCD patients who presented with pain at the ED
in the measurement month.

ED3

Acute Care Visit Form: (1) Date/time of triage (2)
Date/time of first IV pain med administration (3)
Minutes to first IV pain med dose

NOTES:
• If a patient presented more than once during the measurement month,
assess the most recent encounter.
• Pain assessment must be performed using an age-appropriate pain
scale
Numerator: Count of SCD patients presenting at the ED during the
Percent of SCD patients presenting at the
measurement month with an acute pain episode who received
ED with acute pain who received parenteral
parenteral analgesic within 30 minutes of triage
analgesic within within 30 minutes of triage
Denominator: Count of SCD patients presenting at the ED during the
measurement month with acute pain
NOTES:
• If a patient presented more than once during the measurement month,
assess the most recent encounter.
• Registration refers to the time when the patient gave their name and
other personal/insurance information to the registrar upon arrival to the
ED or infusion center/day hospital; triage refers to the time when patient
nurse provides brief, focused assessment of chief complaint and vital
signs and assigns patient's acuity level

[Date] 6:19 PM • Page 1 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
ED4

Question/s on REDCap
Acute Care Visit Form: (1) Date/time of triage (2)
Date/time of first IV pain med administration (3)
Minutes to first IV pain med dose)

Operational Definition
(Numerator & Denominator or other)
Mean in minutes of the interval from triage to administration of
parenteral analgesic for SCD patients presenting at the ED with acute
pain

Measure

Average time from triage to administration
of parenteral analgesic for SCD patients
presenting at the ED with acute pain

NOTES:
• If a patient presented more than once during the measurement month,
assess the most recent encounter.
ED5

Acute Care Visit Form: (1) Date/time of first IV pain
med administration (2 )What date/ time was the
patient's pain re-assessed?

Numerator: Count of SCD patients presenting to the ED in the
measurement month who presented with pain, who received parenteral
analgesic, and had pain reassessed within 30 minutes of initial
parenteral analgesic administration

Percent of SCD patients presenting at the ED
with acute pain who had pain reassessed within
30 minutes of administration of the first dose of
parenteral analgesic

Denominator: Count of SCD patients presenting to the ED in the
measurement month who presented with pain and who received
parenteral analgesic

ED6

Acute Care Form: (1) Date/time of triage (2)
Date/time of IV antibiotic administration (3) Minutes to
first antibiotic dose:

NOTE: If a patient presented more than once during the measurement
month, count the most recent encounter.
Numerator: Count of SCD patients presenting to the ED in the
measurement month who presented with temperature ≥38.5°C or history
of fever (≥38.5°C) within the previous 24 hours who received parenteral
broad spectrum antibiotics within 60 minutes of triage

Percent of SCD patients presenting at the ED
with fever who had broad spectrum parenteral
antibiotics administered within 60 minutes of
triage

Denominator: Count of SCD patient presenting to the ED in the
measurement month who presented with temperature ≥38.5°C
NOTES:
• 'History of fever' requires that the patient's temperature was measured
≥38.5°C within the previous 24 hrs.
• If a patient presented more than once during the measurement month,
count the most recent encounter.

[Date] 6:19 PM • Page 2 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
ED7

ED8

Question/s on REDCap
Acute Care Visit Form: (1) Date/time of triage (2)
Date/time of IV antibiotic administration (3) Minutes to
first antibiotic dose

Operational Definition
(Numerator & Denominator or other)
Mean in minutes of the interval from triage to administration of
parenteral antibiotics for SCD patients presenting at the ED with
temperature ≥38.5°C or history of fever (≥38.5°C) .

Measure

Average time from triage to administration
of parenteral antibiotics for SCD patients
presenting at the ED with fever

NOTES:
• 'History of fever' requires that the patient's temperature was measured
≥38.5°C within the previous 24 hrs.
• If a patient presented more than once during the measurement month,
count the most recent encounter.
Numerators: Count of SCD patients presenting at ED in the
Acute Care Visit Form: (1) Did the patient have a
Percent of SCD patients presenting at ED
measurement
month
with
fever
or
history
of
fever
(≥38.5°C)
who
had
1)
CBC sent within 60 minutes of registration? (2) Did the
with fever who had all indicated tests within
patient have a reticulocyte count sent within 60 minutes blood drawn for CBC, 2) reticulocyte count, 3) blood culture and 4) pulse 60 minutes of triage
oximetry obtained within 60 minutes of triage.
of registration? (3) Did the patient have blood culture
sent within 60 minutes of registration? (4) Did the
Denominator: Count of SCD patients presenting at the ED in the
patient have pulse oximetry performed within 60
measurement month with fever (≥38.5°C) or history of fever
minutes of registration?
NOTES:
• 'History of fever' requires that the patient's temperature was measured
(≥38.5°C) within the previous 24 hrs.
• If a patient presented more than once during the measurement month,
count the most recent encounter.

[Date] 6:19 PM • Page 3 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Hemecare1

Question/s on REDCap
Ambulatory Care Visit Form: (1) On transfusion
protocol? (2) Has the patient been assessed for iron
overload in the past 12 months? Assessment date:

Operational Definition
(Numerator & Denominator or other)
Numerator: Count of SCD patients ≥2 years as of the last day of the
measurement period receiving a chronic transfusion program who had
iron burden assessed within the past 12 months.
Denominator: Count of patients ≥2 years as of the last day of the
measurement period receiving a chronic transfusion program.

Measure

Percent of patients with SCD receiving a
chronic transfusion program who were
assessed for iron burden in the past 12
months

NOTES:
• Assessment for iron overload includes measurement of serum ferritin
level. Iron overload is Serum ferritin level > 1000ng/mL
• Chelation therapy is a treatment to remove excess iron. Medications
used include Desferoxamine (Desferal), Deferasirox (Exjade);
Deferiprone (Ferriprox)
• Goal of therapy is to maintain ferritin <1500 or liver iron <7mg / gm dry
weight by biopsy or MRI [ferriscan]
Hemecare2

Ambulatory Care Visit Form: (1) On transfusion
protocol? (2) Has the patient been assessed for iron
overload in the past 12 months? Assessment date:
(3) Does the patient currently have iron overload? (4) Is
the patient currently on chelation therapy? Chelation
therapy start date:

Numerator: Count of SCD patients ≥2 years of age as of the last day of
the measurement period receiving a chronic transfusion who have
elevated ferritin or liver iron and are currently receiving chelation
therapy.

Percent of SCD patients who are at risk for
iron overload who received chelation
therapy

Denominator: Count of patients ≥2 years as of the last day of the
measurement period receiving a chronic transfusion program and have
elevated ferritin or liver iron.
NOTES
• Iron overload is Serum ferritin level > 1000ng/mL
• Chelation therapy is a treatment to remove excess iron. Medications
used include Desferoxamine (Desferal), Deferasirox (Exjade);
Deferiprone (Ferriprox)
• Chelation therapy is indicated if ferritin >1000 or liver iron >7mg / gm
dry weight by biopsy or MRI [ferriscan]

[Date] 6:19 PM • Page 4 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Hemecare3

Hemecare4

Hemecare5

Question/s on REDCap

Operational Definition
(Numerator & Denominator or other)

Measure

Ambulatory Care Visit Form: (1) Transcranial doppler
screen in past 12 months? Date of last TCD: (2) Did
the patient have at least 1 abnormal TCD in the past 12
months? (3) Did the patient have a repeat TCD within 2
months of the abnormal TCD study? (4) Did the patient
have 2 consecutive abnormal TCDs in the past 12
months? (5) On transfusion protocol?

Numerator: Count of SCD patients with two abnormal TCDs in the past
12 months who were placed on chronic transfusion therapy

Ambulatory Care Visit Form: Transcranial doppler
screen in past 12 months?

Numerator: Count of SCD patients ≥24 months and ≤16 yrs who
received transcranial doppler screening within the past 12 months.

Ambulatory Care Visit Form: Is the patient currently
on hydroxyurea?

Denominator: Count of SCD patients 2-16 yrs as of the last day of the
measurement period.
Numerator: Count of SCD patients ≥24 months of age as of the last day Percent of SCD patients ≥24 months of age
of the measurement period who are currently on hydroxyurea
currently taking hydroxyurea therapy

Percent of SCD patients with two abnormal
TCDs in past 12 months who are on chronic
transfusion therapy

Denominator: Count of SCD patients with two abnormal TCD results in
the past 12 months
• An abnormal TCD showing increased or abnormal time-averaged
maximal mean velocity (TAMMv ≥200cm / s)
• Second
TCD should occur within 30 days of the first abnormal test
• Transfusion should be started within 60 days of the second abnormal
TCD
• A chronic transfusion program includes transfusions more than 3 times
in 90 days
• Transfusions are normally preceded by measurement of Hgb S levels

Percent of SCD patients between ages 2-16
years who received a transcranial doppler within
the past 12 months

Denominator: Count of SCD patients ≥24 months of age as of the last
day of the measurement period who are candidates for hydroxyurea
NOTE:Candidates for hydroxyurea include individuals with ≥ 3 pain
crisis in 12 months, pain that interferes with daily activities or quality of
life, history of severe and/or recurrent chest syndrome, symptomatic
chronic anemia with interferes with daily activities or quality of life.

[Date] 6:19 PM • Page 5 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Hemecare6

Hemecare7

Medhome1

Question/s on REDCap
Ambulatory Care Visit Form: How many times was
the patient admitted to the hospital in the past 12
months for sickle cell related illnesses? How many
times was the patient seen in Day Hospital or Infusion
Center in past 12 months?
Acute Care Visit Form: How many times was the
patient seen in an Emergency Room in past 12
months?
Ambulatory Care Visit Form: In the past 12 months,
has the patient had evaluation with a hematologist or
sickle cell specialist? Date of evaluation?

Operational Definition
(Numerator & Denominator or other)

Measure

Numerator: Count of SCD-related hospital admissions by sampled SCD Average number of hospital stays per SCD
patients
patient in the past 12 months
Denominator: Count of sampled SCD patients

Numerator: Count of SCD-related ED visits by sampled SCD patients in
the past 12 months
Denominator: Count of sampled SCD patients
Numerator: Count of SCD patients with documented evaluation within
12 months of the last day of the measurement month.

Average number of ED visits per SCD patient in
the past 12 months
Percent of SCD patients with an evaluation with
a hematologist or sickle cell specialist
documented within the past 12 months.

Denominator: Count of SCD patients.
NOTES:
•Sickle cell specialists include hematologist, nurse practitioner or
physician assistant specializing in sickle cell care
• An
evaluation' should include (1) review of medical history, (2) physical
examination, (3) complete blood cell count and pulse oximetry
• Patients without a visit in the past 12 months, or lacking documentation
are not included.
• The hematology or specialist visit must have been completed - referral
alone is not sufficient for inclusion
• Telemedicine encounters are included
Medhome2

Ambulatory Care Visit Form: (1) Did the patient have
BP screening in the past 12 months? BP screening
date: (2) Did patient have depression screening in past
12months? Depression screening date (3) Did patient
have ophthalmologic (dilated retinal) exam in the past
12 months? Ophthalmologic exam date:

Numerator: Count of SCD patients ≥18 yrs who had all of the following Percent of adults with SCD 18 yrs and older who
elements of care documented within 12 months of the last day of the
had all recommended elements of care within
measurement period: 1) screening for high blood pressure, 2) screening the past 12 months
for depression, 3) ophthalmologic exam
Denominator: Count of SCD patients 18 yrs and older as of the last day
of the measurement period.

[Date] 6:19 PM • Page 6 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Medhome3

Question/s on REDCap

Operational Definition
(Numerator & Denominator or other)

Measure

Ambulatory Care Visit Form: Does the patient have a Numerator: Count of patients ≥16 years at the time of their most recent Percent of SCD sampled patients 16 years and
SCD visit who had a current transition plan. Include patients whose plan older seen in the past month with a transition
written transition plan?
was completed during the visit.
plan to adult care
Denominator: Count of patients ≥16 years with SCD visits in the
measurement month
NOTE: Transition plan must include the following documented elements:
• A written transfer summary of the medical history (history of
complications, preventive measures, current medications, treatments)
• Patient's readiness to self-manage his or her health care
• Steps needed for a successful transition

Medhome4

Medhome5

Ambulatory Care Visit Form: (1) Does the SCD
patient have a documented primary care provider?

Numerator: Count of patients with a documented primary care provider Proportion of SCD patients with a documented
with whom the patient has completed at least 1 primary care visit within primary care provider with whom the patient has
the past 12 months
completed at least 1 primary care visit within the
past 12 months
Denominator: Count of SCD patients

NOTE: 'documented pcp' means that the patient is assigned to an
individual provider panel
Ambulatory Care Visit Form: Does the patient have a Numerator: Count of patients with a documented care manager within
the past 12 months
care manager?

Proportion of SCD patients with an assigned
care manager to coordinate and improve their
quality of care

Denominator: Count of SCD patients
NOTE: care managers include nurse case managers; care coordinator;
patient navigator; community health workers that help to coordinate care
of SCD patients

[Date] 6:19 PM • Page 7 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Medhome6

Question/s on REDCap
Ambulatory Care Visit Form: (1) In the past 12
months, did the patient have a written individual care
plan?

Operational Definition
(Numerator & Denominator or other)

Measure

Numerator: Count of SCD patients with documented individual care plan Percent of sampled SCD patients who have had
within the past 12 months
a written individual care plan in past 12 months
Denominator: Count of SCD patients

Medhome7

Ambulatory Care Visit Form: (1) In the past 12
months, did the patient have a written individual care
plan? (2) Was the care plan reviewed with the patient
during the current visit?

NOTE: Individual care plan must include: 1) Current medications, 2)
pain management plan, 3) fever management plan, 4) current blood
counts (HGb, HCT)
Numerator: Count of SCD patients with SCD visit during the
measurement month with documented Individual care plan that was
reviewed with the patient

Percent of sampled SCD patients who have a
written individual care plan that was reviewed
with the patient during the current visit.

Denominator: Count of SCD patients with SCD visit in the measurement
month
NOTES:
• Individual care plan must include: Current medications, pain
management plan, fever management plan, current blood counts (HGb,
HCT)
• If the patient had more than one SCD visit during the measurement
month, include the most recent visit
• Include patients whose plan was completed at the time of the visit.
Medhome8

Ambulatory Care Visit Form: (1) Is the patient up to
date for PCV7 / PCV13 vaccination? (2) Is the patient
up to date for PPV23/Pneumovax
vaccination? (3) Is the patient up to date for
meningococcal (MCV4 or MPSV4) vaccination? (4) Is
the patient up to date for haemophilus influenza (HIB)
vaccination? (5) Did the patient receive a flu vaccine
during the past flu season?

Numerator: Count of SCD patients less than 18 yrs as of the last day of Percent of SCD patients <18 years who are up
the measurement period who are up to date with the following
to date with all recommended vaccinations
vaccinations: 1) PCV7 / PCV13, 2) PPV23/Pneumovax, 3)
Meningococcal (MCV4 or MPSV4), 4) Haemophilus influenza (HIB), 5)
annual influenza
Denominator: Count of SCD patients less than 18 yrs as of the last day
of the measurement period.
NOTE: Please refer to the CDC immunization schedule and the catchup immunization schedule for details
http://www.cdc.gov/vaccines/recs/schedules/

[Date] 6:19 PM • Page 8 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label
Medhome9

Profile1

Profile2

Profile3

Question/s on REDCap
Ambulatory Care Visit Form: Is the patient up to date
for PCV7 / PCV13 vaccination? Is the patient up to
date for PPV23/Pneumovax
vaccination? Is the patient up to date for
meningococcal (MCV4 or MPSV4) vaccination? Is the
patient up to date for haemophilus influenza (HIB)
vaccination? Did the patient receive a flu vaccine
during the past flu season?When was the most recent
flu vaccine administered? Is the patient up to date for
hepatitis B, vaccination?

Operational Definition
(Numerator & Denominator or other)
Numerator: Count of SCD patients ≥18 yrs who are up to date with the
following vaccinations: 1) PCV7 / PCV13, 2) PPV23/Pneumovax, 3)
Meningococcal (MCV4 or MPSV4), 4) Haemophilus influenza (HIB), 5)
annual influenza 6) Hepatitis B

Measure
Percent of SCD patients ≥18 years who are up
to date with all recommended vaccinations

Denominator: Count of sampled SCD patients ≥18 yrs as of the last day
of the measurement period.

Count of SCD patients in your network. A sampled patient is one who
has had contact with a network provider within the 24 months prior to
the last day of the current measurement period.
Numerators: Count of SCD patients with each of the following types of
sickle cell disease documented: Sickle Cell Disease (SS) / SickleHemoglobin C Disease (SC) / Sickle Beta-Plus Thalassemia / Sickle
Beta-Zero Thalassemia / Other-specify / Don't Know

Participant Profile: 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
Denominator: Count of sampled SCD patients
(AC/FAC), Beta thalassemia trait, Other trait, Not
available
The country where the patient was born.
Participant Profile: Born in U.S.?
Country of birth:

Count of sampled SCD patients in catchment
area

Distribution of SCD genotypes.

Distribution of country of origin

[Date] 6:19 PM • Page 9 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label

Question/s on REDCap

Operational Definition
(Numerator & Denominator or other)

Measure

SCDscreen1

Participant Profile: (1) Was the diagnosis of
SCD/SCT made in the past 12 months? (a) Yes, SCD
diagnosed in the past 12 months (2) Was the diagnosis
of SCD made in the newborn period (a) Yes, diagnosis
made through newborn screening. Date of
screening:(3) Was confirmatory testing performed?
Yes, Date of confirmatory testing:

Numerator: Count of newborns screened for SCD 2 months prior to the
measurement month who had a positive result and documented
confirmatory test completed within 60 days of birthdate
Denominator: Count of newborns screened for SCD 2 months prior to
the measurement month with positive result
NOTES:
• Confirmatory test hemoglobin electrophoresis, not solubility test (sickle
dex)
• For premature infants, clinicians should use best clinical judgment
about date of initial screening,
• For
premature infants who were transfused in the NICU repeat screen
should be sent at least 4 months post transfusion

SCDscreen2

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period (a) Yes, diagnosis made through
newborn screening. Date of screening: (3) Was
confirmatory testing performed? Yes, Date of
confirmatory testing: (4) Were results given/discussed
with parents/caregiver?
Yes, Date:

Numerator: Count of newborns with positive confirmatory test for SCD in Percent of parents/caregivers of newborns with
the measurement month whose results were discussed with
a positive confirmatory test for SCD who had a
parents/patient
Denominator: discussion about the results
Count of newborns with positive confirmatory test for SCD in the
measurement month
NOTE:
• Confirmatory test hemoglobin electrophoresis, not solubility test (sickle
dex)
• For premature infants, clinicians should use best clinical judgment
about date of initial screening,
• For premature infants who were transfused in the NICU repeat screen
should be sent at least 4 months post transfusion

Percent of newborns with a positive newborn
screening test for SCD who received
confirmatory testing within 2 months of initial
screen

[Date] 6:19 PM • Page 10 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label

Question/s on REDCap

Operational Definition
(Numerator & Denominator or other)

Measure

SCDscreen3

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period (a) Yes, diagnosis made through
newborn screening. Date of screening: (3) Was
confirmatory testing performed? Yes, Date of
confirmatory testing: (5) Was genetic counseling
provided?
Yes, Date:

Numerator: Count of parents/caregivers of newborns with a positive
confirmatory test for SCD 2 months prior to the measurement month
who received genetic education within 2 months of diagnosis
Denominator: Count of newborns with positive confirmatory test for SCD
2 months prior to the measurement month
NOTE:
• Confirmatory test hemoglobin electrophoresis, not solubility test (sickle
dex)
• For premature infants, clinicians should use best clinical judgement
about date of initial screening,
• For premature infants who were transfused in the NICU repeat screen
should be sent at least 4 months post transfusion

Proportion of parents/caregivers of newborns
with a positive confirmatory test for SCD who
received genetic education about SCD within 2
months of diagnosis

SCDscreen4

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period (a) Yes, diagnosis made through
newborn screening. Date of screening: (3) Was
confirmatory testing performed? Yes, Date of
confirmatory testing: (6) Did the newborn have a followup appointment with the hematologist?
Yes, Date:
No

Numerator: Count of newborns with a positive confirmatory test for SCD
2 months prior to the measurement month with hematology visit within
60 days of birthdate
Denominator: Count of infants with positive confirmatory test 2 months
prior to the measurement month
NOTES:
• Sickle cell specialists include hematologist, nurse practitioner or
physician assistant specializing in sickle cell care
• The hematology or specialist visit must have been completed - referral
alone is not sufficient for inclusion

Proportion of newborns with positive
confirmatory test who completed follow-up
appointment with hematologist within 60 days of
birth

[Date] 6:19 PM • Page 11 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label

Question/s on REDCap

Operational Definition
(Numerator & Denominator or other)

Measure

SCDscreen5

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period? (b) No, diagnosis not made in the
newborn period. Diagnosis made through testing after
1 month of age. Date of testing: (3) Was confirmatory
testing performed? Yes, Date of confirmatory testing:
(4) Were the results given/discussed with
patient/parents/caregivers?
Yes, Date:

Numerator: Count of adult patients or parents/caregivers of patients >30
days of age with a positive test for SCD in the measurement month who
had a discussion of the results Denominator: Count of adult patients or
parents/caregivers of patients >30 days of age with a positive test for
SCD in the measurement month
NOTE:
•Test: hemoglobin electrophoresis, not solubility test (sickle dex)

Percent of adult patients or parents/caregivers
of patients >30 days of age with a positive test
for SCD (not identified through newborn
screening) who had a discussion about the
results

SCDscreen6

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period? (b) No, diagnosis not made in the
newborn period. Diagnosis made through testing after
1 month of age. Date of testing: (3) Was confirmatory
testing performed? Yes, Date of confirmatory testing:
(5) Was genetic counseling provided?
Yes, Date:

Numerator: Count of adult patients or parents/caregivers of patients >30
days with a positive test for SCD in the month 2 months prior to
measurement month who received genetic education within 2 months of
diagnosis
Denominator: Count of adult
patients or parents/caregivers of patients >30 days with positive test for
SCD in the month 2 months prior to measurement month
NOTE:
• Tests hemoglobin electrophoresis, not solubility test (sickle dex)

Proportion of adult patients or
parents/caregivers of patients >30 days of age
with a positive test for SCD (not identified
through newborn screening) who received
genetic education about SCD within 2 months of
diagnosis

SCDscreen7

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (a) Yes, SCD diagnosed in the past 12
months (2) Was the diagnosis of SCD made in the
newborn period? (b) No, diagnosis not made in the
newborn period. Diagnosis made through testing after
1 month of age. Date of testing: (3) Was confirmatory
testing performed? Yes, Date of confirmatory testing:
(6) Did the patient have a follow-up appointment with a
hematologist?
Yes, Date:

Numerator: Count of adult patients or patients >30 days with a positive
test for SCD who completed a visit with a hematologist within 6 months
of diagnosis.
Denominator: Count of adult patients or patients >30 days with postive
test for SCD

Proportion of adult patients or patients >30 days
of age with positive test for SCD (not identified
through newborn screening) who had a followup visit with a hematologist after initial diagnosis.

[Date] 6:19 PM • Page 12 of 13

Hemoglobinopathy Learning Collaborative QI Measurement Bank
Measure Label

Question/s on REDCap

SCDscreen8

Operational Definition
(Numerator & Denominator or other)

Measure

Count of patients with positive test for SCT during the current
measurement period

Count of individuals with positive test for SCT

SCDscreen9

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (b) Yes, SCT diagnosed in the past 12
months (2)Was the diagnosis of SCT made in the
newborn period? (a) Yes, diagnosis made through
newborn screening. Date of screening: (5) Was genetic
counseling provided?
Yes, date:

Numerator: Count of parents/caregivers of newborns with a positive test
for sickle cell trait 2 months prior to the measurement month who
received genetic education within 2 months of diagnosis
Denominator: Count of newborns with positive test for sickle cell trait 2
months prior to the measurement month
NOTE:
1) Test: hemoglobin electrophoresis, not solubility test (sickle dex) 2)
This education could occur at hematology, primary care, Community
Based Organization or geneticist office

Proportion of parents/caregivers of newborns
with a positive screen for sickle cell trait who
received genetic education about sickle cell trait
within 2 months of diagnosis

SCDscreen10

(1) Was the diagnosis of SCD/SCT made in the past
12 months? (b) Yes, SCT diagnosed in the past 12
months (2)Was the diagnosis of SCT made in the
newborn period? (b) No, diagnosis not made in the
newborn period. Diagnosis made through testing after
1 month of age. Date of testing: (5) Was genetic
counseling provided?
Yes, Date:

Numerator: Count of adult patients or parents/caregivers of patients >30
days with a positive test for SCT 2 months prior to the measurement
month who received genetic education within 2 months of diagnosis
Denominator: Count of adult patients or patients >30 days with positive
test for SCT 2 months prior to the measurement month NOTE: this
counseling could occur at hematology, primary care, Community Based
Organization or geneticist

Proportion of adult patients or
parents/caregivers of patients >30 days of age
with positive test for sickle cell trait (SCT) (not
identified through newborn screening) who
received genetic education about Sickle Cell
Trait within 2 months of diagnosis

[Date] 6:19 PM • Page 13 of 13