Saves the questions and what to expect into your notes, next to the visit they belong to.
Keep this study
Lead
Boston Children's Hospital
With
Cystic Fibrosis Foundation
Johns Hopkins University
Children's Hospital Medical Center, Cincinnati
Age
3–10
Sex
ALL
Healthy volunteers
Not accepted
You may be eligible if
The child with CF should:
1. Have documentation of a CF diagnosis as evidenced by one or more clinical features consistent with the CF phenotype or one or more of the following criteria:
1. Sweat chloride equal to or greater than 60 milliequivalents per liter (mEq/L) by quantitative pilocarpine iontophoresis test (QPIT)
2. two well-characterized mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene
2. Be between the ages of 3 - 10 years at the time of enrollment
3. Be below the 50th percentile BMI and/or would benefit from behavioral strategies to address mealtime behaviors/have a history of struggling with recommended nutritional intake as determined by the physician, dietitian , psychologist, or other CF Care team member
The parent or legal authorized representative should:
4. Have regular access to a desktop device with internet or an iOS or Android mobile device with internet (tablet with internet or smartphone with a data plan)
5. Be a primary caregiver who is routinely involved in and has primary responsibility for mealtimes with their child
6. Be willing to use Be in Charge and have clinical care team review progress
You may not be if
The child with CF should not:
1. Have a medical condition that would affect diet or growth (e.g., CF related diabetes)
2. Be receiving parenteral nutrition or nutritional supplements via a feeding tube (e.g G-tube, J-tube, nasogastric tube) at time of enrollment
3. Have a significant developmental disability/delay
4. Have a sputum culture positive for Burkholderia Cepacia
5. Have a forced expiratory volume in the first second of expiration (FEV1) of less than 40% Predicted if the child is able to reliably perform spirometry according to American Thoracic Society (ATS) guidelines.
Parents/legal authorized representatives will be excluded if they:
6. Are unable to speak or read English.
7. Have a major psychiatric disorder or disability that would interfere with their ability to use the program or participate in the study.
8. Participated in Phase I of the DESIGN CF study.
