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ABSTRACT: Background
Parents of children living with chronic but manageable conditions hope for improved therapies or cures, including Advanced Therapy Medicinal Products (ATMPs). Multiple pediatric clinical trials for ATMPs are underway, but the risk profile of ATMPs for chronic conditions is largely unknown and likely different than for terminal pediatric illnesses. Applying Protection Motivation Theory modified to the context of pediatric ATMP clinical trial enrollment, our study analyses information needs of parents of children living with chronic manageable conditions: Type 1 Diabetes (T1D) or Inherited Retinal Diseases (IRD).Methods
We conducted semi-structured interviews with 15 parents of children living with T1D and 14 parents of children living with an IRD about: a) family
SUBMITTER: Brooks SP
PROVIDER: S-EPMC7075002 | biostudies-literature | 2020 Mar
REPOSITORIES: biostudies-literature