IRB Documents and Training Materials

On this page, Research Coordinators can access current IRB documents and materials for the trial, including the questionnaires for patient, caregiver, and provider outcome assessments.

Need Support?

Please contact the Research Project Manager at the MJHS Institute, Dr. Stephanie DiFiglia at SDiFigli@mjhs.org or (212) 649-5246.

Current Protocol
Table of Assessments for Patients and Caregivers

MGH IRB Documents
Emory IRB Documents
MSBI IRB Documents
Northwell Health IRB Documents
Stony Brook IRB Documents

Adult Patient (English)
Adult Patient (Spanish)
Adult Caregiver (English)
Adult Caregiver (Spanish)
Pediatric Patient and Caregiver (English)
Pediatric Patient and Caregiver (Spanish)

Email Recruitment Script - Adult Patient Version (English)
Email Recruitment Script - Adult Patient Version (Spanish)
Email Recruitment Script - Adult Caregiver (English)
Email Recruitment Script - Adult Caregiver (Spanish)
Email Recruitment Script - Pediatric Patient and Caregiver (English)
Email Recruitment Script - Pediatric Patient and Caregiver (Spanish)

Reminder Phone Script - Caregiver Participants
Reminder Phone Script - Adult Patients
Reminder Phone Script - Parents or Guardians of Patients Under 18
Telephone Recruitment Script - Caregivers of Patients 18 or Older
Telephone Recruitment Script - Caregivers of Patients Under 18
Telephone Recruitment Script - Adult Patients (age 18 and over)

Patients Age 12 and over Eligibility Checklist Screening Form
Caregiver of Adult Patients Eligibility Checklist Screening Form
Caregiver of Pediatric Patients Under Age 18 Eligibility Checklist Screening Form

Survey Link Email Template (English)
Survey Link Email Template (Spanish)

Adult Caregiver Consent (English)
Adult Caregiver Consent (Spanish)
Adult Patient Consent (English)
Adult Patient Consent (Spanish)
Assent (English)
Assent (Spanish)
Child caregiver consent (English)
Child caregiver consent (Spanish)
Provider Consent

Adult patient survey (English)
Adult patient survey (Spanish)
Patient 14-17 years survey (English)
Patient 14-17 years survey (Spanish)
Patient age 13 survey (English)
Patient age 13 survey (Spanish)
Patient age 12 survey (English)
Patient age 12 survey (Spanish)
Caregiver of adult patient survey (English)
Caregiver of adult patient survey (Spanish)
Caregiver of patient aged 12-17 survey (English)
Caregiver of patient aged 12-17 survey (Spanish)
Caregiver of child aged 6-11 survey (English)
Caregiver of child aged 6-11 survey (Spanish)
Caregiver of child aged 0-5 survey (English)
Caregiver of child aged 0-5 survey (Spanish)
Caregiver of multiple children with CF ages 0-5 survey (English)
Caregiver of multiple children with CF ages 0-5 survey (Spanish)
Caregiver of multiple children with CF ages 6-11 survey (English)
Caregiver of multiple children with CF ages 6-11 survey (Spanish)
Provider baseline assessment

Disease and Treatment Characteristics (completed by research staff)
Process Data
Cost Data (completed by Site Leads)

Research Coordinator Training Manual

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