Form 2 Performance Measures Data Collection Documents

Appendix C
SCDTDRCP Performance Measures Data Collection Documents

Includes:
SCDTDRCP Provider Survey (pgs. 2–4)
Aggregate Performance Measures CoLab Data Entry Form for SCDTDRCP Grantees (pgs. 5-47)

Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Provider Survey
From: [add name of organization with IRB approved survey distributor]

Hello,
You are being asked to participate in this survey to help us better understand variation among types of
providers in the evaluation and treatment of patients with sickle cell disease. Completing this survey will
provide valuable information, even if you only see a small number of patients with sickle cell disease.
We know that your time is valuable and we greatly appreciate your assistance with this study.

Informed Consent: We have obtained permission to distribute this survey to health care providers from
the [add name of IRB] Institutional Review Board.

Privacy: Your privacy will be maintained in all published and written data resulting from the survey. We
will not use your name or address for any non-research purposes without your consent.

Rights of Participants: Your contribution is entirely voluntary and you have the right to discontinue the
survey at any time. You also have the right to refuse to answer specific questions.

Eligibility: Licensed Prescribing Medical Providers (Physicians, Nurse Practitioners, Physician Assistants).

NOTE: You have been selected to participate in this survey because you are part of, or have participated
in, a program run by the Sickle Cell Disease Treatment Demonstration Program. This program works
with five regional teams from across the country to increase the number of providers treating persons
for sickle cell disease or sickle cell related issues, increase the number of providers prescribing disease
modifying therapies, such as hydroxyurea, and increase the number of patients receiving regular care
from providers knowledgeable about treating sickle cell disease.

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
information collection is 0915-XXXX and it is valid until XX/XX/202X. This information collection is voluntary. Public
reporting burden for this collection of information is estimated to average 1 hour 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
14N136B, Rockville, Maryland, 20857 or [email protected].

ABOUT YOU AND YOUR PRACTICE

Date survey completed: _

_ (MM/DD/YYYY)

1. What type of licensed prescriber are you? [Please check one]
 Medical Doctor (MD, DO, MBBS, etc.)
 Nurse practitioner
 Physician assistant
 Other (Please specify)
2. Do you treat adults, children, or both?
 Adults (≥18 years old)
 Children (<18 years old)
 Both
3. What is your primary specialty/subspecialty? [Please check one]]











Hematology
Hematology/Oncology
Primary care-Pediatrics
Primary Care-Internal Medicine
Primary Care-Family Medicine
Primary Care-Med/Peds
Hospitalist
Emergency Medicine
Other (Please specify)

4. Are you a regional or state lead for one of the Sickle Cell Disease Regional Demonstration
Program regions? [Regions = Sickle Treatment & Outcomes Research in the Midwest (STORM),
Pacific Sickle Cell Regional Collaborative, Sickle Cell Improvement Across the NorthEast ReGion
(SiNERGe), Heartland Sickle Cell Disease Network, and the Education and Mentoring to Bring
Access to CarE for SCD (EMBRACE) Network]
 Yes
 No
5. Please list the ZIP code(s) for all practice locations where you see patients
-

6. Which of the following best describes your primary practice location? [Check all that apply]
 Solo private practice
 Group private practice
 Practice affiliated with a university or medical school
 Practice affiliated with a non-profit hospital or hospital system
 Practice affiliated with a for profit hospital or hospital system
 Practice/clinic owned by a health maintenance organization or insurance company
 Federally Qualified Health Center or Community Health Center
 State or local government clinic
 Other (please specify)

ABOUT YOUR SICKLE CELL PATIENTS
7. IN THE PAST 12 MONTHS, did you personally see any patients with sickle cell disease?
 No (skip to QUESTION 12)
 Yes (continue with QUESTION 8)
8. IN THE PAST 12 MONTHS, how many unique patients with sickle cell disease did you
personally see?
a. Number of adults (age ≥18)
i. OPTIONAL: Number of these adults with genotype Hb SS or Hb Sβ0thalassemia
b. Number of children (age < 18)
i. OPTIONAL: Number of these children with genotype Hb SS or Hb Sβ0thalassemia
9. IN THE PAST 12 MONTHS, for how many unique sickle cell patients did you prescribe
hydroxyurea? (Note: we are interested in the number of patients to whom you gave a
prescription, NOT how many went on to fill the prescription)
a. Number of adults (age ≥18) prescribed hydroxyurea
(i)
OPTIONAL: Number of adults (age 18+) with genotype Hb SS or Hb Sβ0thalassemia prescribed hydroxyurea
b. Number of children (age <18) prescribed hydroxyurea _
(i) OPTIONAL: Number of children (age < 18) with genotype Hb SS or Hb Sβ0thalassemia prescribed hydroxyurea
i.
10. IN THE PAST 12 MONTHS, did any of your sickle cell patients use outpatient, billable
telemedicine to receive sickle cell care?
 Yes
 1-5 patients
 6-10 patients
 >10 patients
 No
 Don’t know
11. Please tell us how you provided the patient data for Questions 8-10.
 Recall
 Chart review
 EHR data pull
ABOUT YOUR USE OF TELEMENTORING
12. Have you ever participated in TeleECHO related to sickle cell disease? [TeleECHO is a training
model that uses multi-point teleconferencing with specialist mentors to engage clinicians in
order to manage patients with complex conditions, such as sickle cell disease. TeleECHO
sessions include education, virtual clinics, and/or case presentations.]
 Yes
a. If Yes, IN THE PAST 12 MONTHS, how many times did you participate in
TeleECHO related to sickle cell disease?
 No
13. How would you rate your current level of comfort treating sickle cell patients?
 Very low
 Low
 Medium
 High
 Very high

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Performance Measures (2020) · NICHQ
Surveys-Sent: (All Providers) Providers Sent the SCDTDP Provider Survey
Count
Count
Annotation

Annotation
No data

PM-1-Total: (Access to Care) Number of SCDTDP Network Providers
Count
Count
Annotation

Annotation
No data

PM-1a: (Access to Care) Providers by Provider Type 
Medical Doctor
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation

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No data

Nurse Practitioner
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Physician Assistant
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other Provider
Numerator
Numerator

Denominator

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Denominator

Percent
Percent
Annotation

Annotation
No data

PM-1b: (Access to Care) Providers by Age Group 
Adults (≥18 years of age)
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Children (<18 years of age)
Numerator
Numerator
Denominator

Denominator
Percent
Percent

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Annotation
Annotation

No data

Both
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-1c: (Access to Care) Providers by Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hematology/Oncology

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Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Pediatrics
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Internal Medicine
Numerator
Numerator
Denominator

Denominator
Percent

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Percent

Annotation
Annotation

No data

Primary Care - Family Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hospitalist

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Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Emergency Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other
Numerator
Numerator
Denominator

Denominator
Percent

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Percent

Annotation
Annotation

No data

PM-1d: (Access to Care) Regional or State Leads Providers 
Regional or State Leads
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-1e: (Access to Care) Providers by Primary Practice Location 
Rural Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent

Annotation

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Annotation

No data

Urban Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-1f: (Access to Care) Providers by Primary Practice Location/Type

Solo private practice
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Group private practice

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Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Practice affiliated with a university or medical school
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Practice affiliated with a non-profit hospital or hospital system
Numerator
Numerator
Denominator

Denominator
Percent

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Percent

Annotation
Annotation

No data

Practice affiliated with a for-profit hospital or hospital system
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Practice/clinic owned by a health maintenance organization or insurance
company
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

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Federally qualified health center or community health center
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

State or local government clinic
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other practice type (please annotate)
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

PM-2-Total: (Access to Care) Number of Sickle Cell Patients
Count
Count
Annotation

Annotation
No data

PM-2a: (Access to Care) Patients by Age Group 
<18 years of age
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

≥18 years of age
Numerator

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Numerator

Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

PM-2b: (Access to Care) Patients by Provider Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hematology/Oncology
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

Primary Care - Pediatrics
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Internal Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

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Primary Care - Family Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hospitalist
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

Emergency Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

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PM-3-Total: (Provider Education) Number of Providers Participating in Telementoring
Count
Count
Annotation

Annotation
No data

PM-3a: (Provider Education) Providers Participating in Telementoring by Provider Type 
Medical Doctor
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Nurse Practitioner
Numerator
Numerator
Denominator

Denominator
Percent

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Percent

Annotation
Annotation

No data

Physician Assistant
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other Provider
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

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PM-3b: (Provider Education) Providers Participating in Telementoring by Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hematology/Oncology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Pediatrics
Numerator
Numerator

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Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

Primary Care - Internal Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Family Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent

Annotation

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Annotation

No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hospitalist
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Emergency Medicine
Numerator

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Numerator

Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

Other
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-3c: (Provider Education) Providers Participating in Tele-mentoring
by Primary Practice Location 
Rural Zip Codes
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

Urban Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-3d: (Provider Education) Regional or State Leads Providers Participating in
Tele-mentoring
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation

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No data

PM-4-Total: (Provider Education) Number of Providers Reporting Feeling
Comfortable Treating Patients
Count
Count
Annotation

Annotation
No data

PM-4a: (Provider Education) Providers Reporting Feeling Comfortable
Treating Patients, by Provider Type 
Medical Doctor
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Nurse Practitioner
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

Physician Assistant
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other Provider
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

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PM-4b: (Provider Education) Providers Reporting Feeling Comfortable
Treating Patients, by Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hematology/Oncology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Pediatrics
Numerator
Numerator

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Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

Primary Care - Internal Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Family Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent

Annotation

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Annotation

No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hospitalist
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Emergency Medicine
Numerator

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Numerator

Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

Other
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-4c: (Provider Education) Providers Reporting Feeling Comfortable
Treating Patients, by Primary Practice Location 
Rural Zip Codes
Numerator
Numerator
Denominator

Denominator

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Percent
Percent
Annotation

Annotation
No data

Urban Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-5-Total: (Hydroxyurea Use) Number of Providers That Prescribed
Hydroxyurea,
Count
Count
Annotation

Annotation
No data

PM-5a: (Hydroxyurea Use) Providers That Prescribed Hydroxyurea, by
Provider Type 
Medical Doctor

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Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Nurse Practitioner
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Physician Assistant
Numerator
Numerator
Denominator

Denominator
Percent

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Percent

Annotation
Annotation

No data

Other Provider
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

PM-5b: (Hydroxyurea Use) Providers That Prescribed Hydroxyurea, by
Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation

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No data

Hematology/Oncology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Pediatrics
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Internal Medicine
Numerator
Numerator

Denominator

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Denominator

Percent
Percent
Annotation

Annotation
No data

Primary Care - Family Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation

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No data

Hospitalist
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Emergency Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other
Numerator
Numerator

Denominator

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Denominator

Percent
Percent
Annotation

Annotation
No data

PM-5c: (Hydroxyurea Use) Providers That Prescribed Hydroxyurea, by
Primary Practice Location 
Rural Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Urban Zip Codes
Numerator
Numerator
Denominator

Denominator
Percent
Percent

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Annotation
Annotation

No data

PM-6-Total: (Hydroxyurea Use) Number of Patients That Saw Providers That
Prescribed Hydroxyurea
Count
Count
Annotation

Annotation
No data

PM-6a: (Hydroxyurea Use) Patients Seen by Provider That Prescribed
Hydroxyurea, by Age Group 
<18 years of age
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

≥18 years of age
Numerator
Numerator

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

38/43

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NICHQ at Performance Measures (2020) | NICHQ

Denominator
Denominator
Percent

Percent
Annotation
Annotation

No data

PM-6b: (Hydroxyurea Use) Patients Seen by Provider That Prescribed
Hydroxyurea, by Specialty/Subspecialty 
Hematology
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hematology/Oncology
Numerator
Numerator
Denominator

Denominator
Percent

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

39/43

1/23/2020

NICHQ at Performance Measures (2020) | NICHQ

Percent

Annotation
Annotation

No data

Primary Care - Pediatrics
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Internal Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Family Medicine

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

40/43

1/23/2020

NICHQ at Performance Measures (2020) | NICHQ

Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Primary Care - Med/Peds
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Hospitalist
Numerator
Numerator
Denominator

Denominator
Percent

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

41/43

1/23/2020

NICHQ at Performance Measures (2020) | NICHQ

Percent

Annotation
Annotation

No data

Emergency Medicine
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

Other
Numerator
Numerator
Denominator

Denominator
Percent
Percent
Annotation

Annotation
No data

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

42/43

1/23/2020

https://scdtdp.data.nichq.org/data/nichq/90/#measureset-19

NICHQ at Performance Measures (2020) | NICHQ

43/43