Resources and References

Resources

AFTD webinars on FTD genetics

Booklet

Additional Resources

  • The FTD Disorders Registry is a non-profit co-founded by AFTD to connect individuals to clinical research opportunities, provide resources on research participation, and gather information about the lived experience of FTD to inform clinical research. The Registry offers additional resources related to genetic counseling and testing.
  • The National Human Genome Research Institute provides an overview of the Genetic Information Nondiscrimination Act (GINA) and describes what protections GINA does and does not offer.
  • The National Institute on Aging offers many fact sheets about FTD and other forms of dementia.
  • The National Society of Genetic Counselors can help you locate a certified genetic counselor with neurogenetic expertise in your area, or available via telehealth. There is a Spanish-language version of its website, as well as a Spanish version of its "Find a Genetic Counselor" feature.
  • The University of Utah’s Genetic and Science Learning Center provides an introduction to the fundamentals of genetics and genetic disorders.
  • Cure VCP Disease is a patient advocacy organization devoted to raising awareness and finding a cure for disorders caused by pathogenic variants in the VCP gene, including FTD.
  • CureMAPTFTD is a patient advocacy organization devoted to raising awareness and finding a cure for FTD caused by pathogenic variants in the MAPT gene.
  • End the Legacy is a patient advocacy organization devoted to raising awareness and finding a cure for genetic forms of FTD and ALS.
  • CurePSP is a patient advocacy organization devoted to raising awareness and finding a cure for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

References

Content in the FTD Genetics section of AFTD’s website draws from numerous studies since 2009:

  1. Bandopadhyay et al. (2023). Advances in the Understanding of Frontotemporal Dementia. Cells, 12(5). (PMID: 36899917) 
  2. Dratch et al. (2023). Evaluation of an Educational Conference for Persons Affected by Hereditary Frontotemporal Degeneration and Amyotrophic Lateral Sclerosis. PEC Innov. (PMID: 37214502) 
  3. Goldman, J. S., & Van Deerlin, V. M. (2018). Alzheimer’s Disease and Frontotemporal Dementia: The Current State of Genetics and Genetic Testing Since the Advent of Next-Generation Sequencing. Molecular diagnosis & therapy. 22(5). (PMID: 29971646) 
  4. Greaves, & Rohrer. (2019). An Update on Genetic Frontotemporal Dementia. J Neurol, 266(8). (PMID: 31119452) 
  5. Heuer et al. (2020). Comparison of Sporadic and Familial Behavioral Variant Frontotemporal Dementia (FTD) in a North American Cohort. Alzheimer’s & dementia: the Journal of the Alzheimer’s Association. 16(1). (PMID: 31914226) 
  6. Knopman, D. S., & Roberts, R. O. (2011). Estimating the Number of Persons with Frontotemporal Lobar Degeneration in the US Population. Journal of molecular neuroscience. 45(3). (PMID: 21584654) 
  7. Mesaros et al. (2021). Investigating the Genetic Profile of the Amyotrophic Lateral Sclerosis/Frontotemporal Dementia (ALS-FTD) Continuum in Patients of Diverse Race, Ethnicity, and Ancestry. Genes (Basel). 13(1):76. (PMID: 35052416) 
  8. Olszewska et al. (2016). Genetics of Frontotemporal Dementia. Curr Neurol Neurosci Rep. 16(12). (PMID: 27878525)  
  9. Ramos et al. (2020). Genetic Screening of a Large Series of North American Sporadic and Familial Frontotemporal Dementia Cases. Alzheimers Dement. 16(1). (PMID: 31914217) 
  10. Roggenbuck, J. (2021). C9orf72 and the Care of the Patient With ALS or FTD: Progress and Recommendations after 10 Years. Neurol Genet. 7(1). (PMID: 33575483) 
  11. Rohrer et al. (2009). The Heritability and Genetics of Frontotemporal Lobar Degeneration. Neurology. 73(18). (PMID: 19884572) 
  12. Seelaar et al. (2010). Clinical, Genetic and Pathological Heterogeneity of Frontotemporal Dementia: A Review. J Neurol Neurosurg Psychiatry. 82(5). (PMID: 20971753)
  13. Sirkis et al. (2019). Recent Advances in the Genetics of Frontotemporal Dementia. Curr Genet Med Rep. 7(1). (PMID: 31687268) 
  14. Wong et al. (2021). Knowledge Assessment and Psychological Impact of Genetic Counseling in People at Risk for Familial FTD. Alzheimers Dement (Amst). 13(1). (PMID: 34337135) 

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Resources and References