Protocol - Pediatric School Performance
- Concentrated Poverty
- Day Care Attendance
- Educational Attainment - Community
- Educational Attainment - Individual
- Race/Ethnic Residential Segregation - American Community Survey
- Race/Ethnic Residential Segregation - Separation (S) Index, Unbiased
- Race/Ethnic Residential Segregation - U.S. Census
- Social Vulnerability
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.
Specific Instructions
The Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this measure can be supplemented with the Day Care Attendance and the Educational Attainment - Individual protocol 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 childs academic achievement records and report card to verify the information collected by the protocol (e.g., number of days missed from school.)
Additionally, the SRSP recommends that investigators capture relevant Demographics (e.g., Current Address to capture zip code) and Social Determinants of Health protocols (e.g., Social Vulnerability, Race/Ethnic Residential Segregation - U.S. Census, Race/Ethnic Residential Segregation - Separation (S) Index, Unbiased, Race/Ethnic Residential Segregation - American Community Survey, Educational Attainment - Community, Concentrated Poverty) that impact access to adequate schools and educational opportunities.
Availability
This protocol is freely available; permission not required for use.
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 Category | Required |
|---|---|
| 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
Lifestage
Toddler, Child, Adolescent
Participants
Children and adolescents, ages 24 months to 18 years
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
| Standard | Name | ID | Source |
|---|---|---|---|
| caDSR Form | PhenX PX840201 - Pediatric School Performance | 6254785 | caDSR Form |
Derived Variables
None
Process and Review
The PhenX Sickle Cell Disease Research and Scientific Panel (SRSP) reviewed this protocol in May 2022. Guidance from the SRSP includes:
- Updates to Related Measures
- Updates to Specific Instructions
Protocol Name from Source
Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire
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 Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX840201_PediatricSchool_Performance_Current_Age | ||||
| PX840201020000 | What is your child's current age? | N/A | ||
| PX840201_PediatricSchool_Performance_Current_Grade | ||||
| PX840201010000 | What is your child's current grade? | N/A | ||
| PX840201_PediatricSchool_Performance_Learning_Accommodations | ||||
| PX840201040100 | Does your child have any accommodations more | N/A | ||
| PX840201_PediatricSchool_Performance_Learning_AccommodationsOther | ||||
| PX840201040200 | Does your child have any accommodations more | N/A | ||
| PX840201_PediatricSchool_Performance_Repeat_Grade | ||||
| PX840201030100 | Has your child ever been held back or more | N/A | ||
| PX840201_PediatricSchool_Performance_Repeat_Grade_Number | ||||
| PX840201030200 | How many grades? | N/A | ||
| PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes1 | ||||
| PX840201030300 | Which grade(s)? (List up to 3 most recent grades) | N/A | ||
| PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes2 | ||||
| PX840201030400 | Which grade(s)? (List up to 3 most recent grades) | N/A | ||
| PX840201_PediatricSchool_Performance_Repeat_Grade_WhichOnes3 | ||||
| PX840201030500 | Which grade(s)? (List up to 3 most recent grades) | N/A | ||
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
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 840201 | Pediatric School Performance |