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Protocol - Pediatric School Performance

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Protocol Name from Source:

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

Availability:

Publicly available

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

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Toddler, Child, Adolescent

Specific Instructions:

The Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this measure can be supplemented with the [slink[www.phenxtoolkit.org/index.php?pageLink=browse.protocols&id=60900|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.

Research Domain Information

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.

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 Text4924422CDE Browser

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_GradePX840201010000What is your child¿¿¿s current grade?4N/A
PX840201_PediatricSchool_Performance_Current_AgePX840201020000What is your child¿¿¿s current age?4N/A
PX840201_PediatricSchool_Performance_Repeat_GradePX840201030100Has your child ever been held back or repeated a grade?4N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_NumberPX840201030200How many grades?4N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes1PX840201030300Which grade(s)? (List up to 3 most recent grades)4N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes2PX840201030400Which grade(s)? (List up to 3 most recent grades)4N/A
PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes3PX840201030500Which grade(s)? (List up to 3 most recent grades)4N/A
PX840201_PediatricSchool_Performance_Learning_AccommodationsPX840201040100Does your child have any accommodations because of learning differences? Check all that apply4N/A
PX840201_PediatricSchool_Performance_Learning_AccommodationsOtherPX840201040200Does your child have any accommodations because of learning differences? Other4N/A