Cognitive Interviews to Assess Content Validity of Questionnaires for Persons Affected by Behavioral Variant Frontotemporal Dementia (bvFTD) and Their Informants Biogen, a biotechnology company based in Cambridge, MA is partnering with ICON, an established contract research organization, to conduct phone interviews with persons diagnosed with behavioral variant FTD (bvFTD) and their care partner (informant). Biogen, the sponsor of the study, wants to better understand the symptoms and daily living experience of bvFTD as well as the usefulness and relevance of different questionnaires.
Persons diagnosed with bvFTD and their informant (care partner) would participate in a single, and separate phone interview. The interview itself would last between 60-120 minutes. Participation in the study is completely voluntary and would not affect current treatment or be included in the medical record of the person diagnosed. All participants must be fluent in English and at least 18 years of age at the time of signing the informed consent.
A person diagnosed with bvFTD who is interested in participating:
Must have a probable bvFTD diagnosis supported by clinical and imaging history (sporadic FTD) or a clinical diagnosis supported by a known mutation in the MAPT, GRN or C9ORF72 genes (familial FTD)
Must be able to understand the purpose of the study and provide signed and dated informed consent. If the person with bvFTD is unable to consent, they must have a legal guardian/power of attorney who is willing to provide informed consent for them.
Informant (care partner) who is interested in participating:
Should be a family member or friend of the person diagnosed, who in the opinion of the investigator, can accurately report on the person’s disease experience as well as their basic and complex activities of daily living
Must be able to understand purpose and risks of the study and provide signed and dated informed consent
If person diagnosed with bvFTD is unable to give informed consent, the informant must have power of attorney/legal guardianship of the person diagnosed and authorization to use their protected health information
If you are interested in learning more about this study, or volunteering as a participant.