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Protocol - Pediatric School Performance

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Description:

This protocol includes four questions from the Education - School Questionnaire from the Pediatric Hydroxyurea Phase III Clinical Trial (BABY HUG). The four questions capture the child’s current grade and age, whether the child has ever been held back, and if so how many and which grades, and whether the child receives special accommodations for education.

Protocol:

BABY HUG Part VII: EDUCATION - SCHOOL QUESTIONNAIRE

1. What is your child’s current grade? __________

2. What is your child’s current age? ________ years __________months

3. Has your child ever been held back or repeated a grade?

[ ] 1 Yes

[ ] 2 No

A. How many grades?

[ ] 1

[ ] 2

[ ] 3 or more

B. Which grade(s)? (List up to 3 most recent grades) ______ ______ ______

4. Does your child have any accommodations because of learning differences? Check all that apply:

[ ] A. Special Education Services

[ ] B. 504 plan

[ ] C. IEP-individualized education plan

[ ] D. Special tutoring or classes not available to regular students

[ ] E. Other
1. Describe: ______________________

[ ] F. My child does not receive any accommodation for learning differences

Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage:

Toddler, Child, Adolescent

Participants:

Children and adolescents, ages 24 months to 18 years

Specific Instructions:

The Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this measure can be supplemented with the Day Care/Preschool Attendance measure in the Toolkit.

Although this measure has been validated for use in ages 24 months to 21 years, it is most practical in pediatric populations.

The SRSP recommends that investigators ask parents to bring in a copy of the child's report card to verify the number of days missed from school.

Selection Rationale

Several questionnaires were considered, but the questionnaire from the Pediatric Hydroxyurea Phase III Clinical Trial (BABY HUG) was selected because it was used in a major sickle cell disease clinical trial, captures which grades were repeated, and includes multiple education accommodations.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Pediatric School Performance Questionnaire Assessment Text 4924422 CDE Browser
Derived Variables

None

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

U.S. Department of Health and Human Services. National Institutes of Health. National Institutes of Health. National Heart, Lung, and Blood Institute (NHLBI). Pediatric Hydroxyurea Phase III Clinical Trial (BABY HUG). Part VII: Education - School Questionnaire. Questions 1-4.

General References

Thompson BW, Rogers ZR, Miller ST, Rees RC, Ware RE, Waclawiw MA, Iyer RV, Casella JF, Luchtman-Jones L, Rana S, Thornburg CD, Kalpatthi RV, Barredo JC, Brown RC, Sarnaik S, Howard TH, Luck L, & Wang WC. (2010). The Pediatric Hydroxyurea Phase III Clinical Trial (BABY HUG): Challenges of Study Design. Pediatric Blood & Cancer 5, 250-255.

Lebensburger JD, Miller ST, Howard TH, Casella JF, Brown RC, Lu M, Iyer RV, Sarnaik S, Rogers ZR, & Wang WC. (2011). Influence of severity of anemia on clinical findings in infants with sickle cell anemia: Analyses from the BABY HUG study. Pediatric Blood & Cancer 59, 675-678.

Armstrong FD, Elkin D, Brown R, Glass P, Rana S, Casella J, Kalpatthi R, Pavlakis S, Mi Z, & Wang W. (2013). Developmental function in toddlers with sickle cell anemia: A report from the BABY HUG Trial. Pediatrics 131(2), e406-14.

Protocol ID:

840201

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX840201_PediatricSchool_Performance_Current_Age PX840201020000 What is your child's current age? 4 N/A
PX840201_PediatricSchool_Performance_Current_Grade PX840201010000 What is your child's current grade? 4 N/A
PX840201_PediatricSchool_Performance_Learning_Accommodations PX840201040100 Does your child have any accommodations because of learning differences? Check all that apply 4 N/A
PX840201_PediatricSchool_Performance_Learning_AccommodationsOther PX840201040200 Does your child have any accommodations because of learning differences? Other 4 N/A
PX840201_PediatricSchool_Performance_Repeat_Grade PX840201030100 Has your child ever been held back or repeated a grade? 4 N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_Number PX840201030200 How many grades? 4 N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes1 PX840201030300 Which grade(s)? (List up to 3 most recent grades) 4 N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes2 PX840201030400 Which grade(s)? (List up to 3 most recent grades) 4 N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes3 PX840201030500 Which grade(s)? (List up to 3 most recent grades) 4 N/A
Research Domain Information
Measure Name:

Pediatric School Performance

Release Date:

July 30, 2015

Definition

A questionnaire to assess educational performance and learning accommodations.

Purpose

Many rare genetic conditions (e.g., sickle cell disease) and other diseases are associated with developmental delays, damage to the central nervous system, and frequent absences from school due to illness, all of which can impact school performance.

Keywords

Sickle cell disease, SCD, demographics, education, educational attainment, school, college, socioeconomic status, economic status, social status, student, Pediatric Hydroxyurea Phase III Clinical Trial, BABY HUG, learning disability, intelligence, developmental delay