Evaluation of an educational conference for persons affected by hereditary frontotemporal degeneration and amyotrophic lateral sclerosis.

There are limited studies exploring the support and education needs of individuals at-risk for or diagnosed with hereditary frontotemporal degeneration (FTD) and/or amyotrophic lateral sclerosis (ALS). This study evaluated a novel conference for this population to assess conference efficacy, probe how participants assessed relevant resources, and identify outstanding needs of persons at-risk/diagnosed. We implemented a post-conference electronic survey that probed participants' satisfaction, prior experience with resources, and unmet needs. Along with multiple-choice, free-text items were included to gather qualitative context. Survey completion rate was 31% (115/376 attendees who were emailed the survey). There was positive interest in pursuing genetic counseling among eligible responders: 61% indicated they planned to seek genetic counseling because of the conference, which was significantly more than those who were undecided (21%) or did not plan to seek genetic counseling (18%). Qualitative data demonstrated need for additional education, support, and research opportunities. Conference reactions indicate this is a valued resource. Results indicated the importance of raising awareness about existing resources, and the need for further resource development, especially for at-risk communities. While most resources are developed for caregivers' needs, this unique program targets at-risk individuals and unites ALS and FTD communities.

Informations de copyright

© 2022 The Authors.

Déclaration de conflit d'intérêts

Laynie Dratch receives consulting fees from Passage Bio and has received honoraria from the Muscular Dystrophy Association (MDA) and NSGC. Cynthia Clyburn has received honoraria from the MDA. Tanya Bardakjian is employed by Sarepta, a gene therapy company, and has financial relationships with Novartis, Invitae, Vigil Therapeutics, and Genome Medical. Murray Grossman participates in treatment trials sponsored by Passage Bio, Alector, and Prevail, and is a member of the Medical and Scientific Advisory Board of AFTD; he also receives funding from NIH and Department of Defense. Brianna Morgan receives funding support from the NIH and P.E.O. International. David J. Irwin is on the scientific advisory board of Denali Therapeutics. None of these sources of funding represent a conflict of interest. Katheryn A. Q. Cousins, Weiyi Mu, Elisabeth McCarty Wood, and Lauren Massimo declare no conflicts of interest.