BONUS: A Convo on FTD Research with Dr. David Irwin and Dr. Lauren Massimo
Bonus Episode - Number Two! Yahoo!
We are back at it with the our two pals who kicked off Season 8 - Dr. David Irwin and
Dr. Lauren Massimo.
Welcome back, you two and thanks for agreeing to spend a little more time with us. We hope you all enjoy the episode… read on for a sweet little recap.
The episode starts with a powerful description of research, really honing in on an important aspect that it entails. Research is “decisions based on data” … the data coming from what the research finds. There are two different types of research:
Observational: collecting data (Blood samples, MRI, cognitive testing, etc.
Clinical Trials: testing interventions (studying drugs) and restructuring the environment (non-pharmaceutical measures).
Observational Research:
Described as important, vital, important and essential, observational is geared towards understanding the biology of the disease and the pathology in the brain. The observational research also compiles a natural family history while simultaneously collecting biomarkers (blood samples) to study/observe both facets of a person.
So fascinating that both the social and the medical sides are observed.
Clinical Trials:
We chatted with our friend Dahlia all about the pharmaceutical clinical trials. Read that blog HERE or listen to that episode by clicking HERE! Dahlia breaks it dowwwn!!
But, my friends - there are other clinical trials that are at play that don’t involve medications or infusions! They include things like adding in exercise, creating/changing/manipulating the environment. Upenn conducted a study that involved health care coaches as a ‘treatment” for care partners. The idea was to increase levels of self care/accountability and to think about their own needs as well. There was a six month intervention period with results that proved the higher the level of self care/self preservation the lower numbers of behaviors seen in the person affected with FTD. The caregiver is less stressed, so is the care receiver. So powerful!
Another form of research that plays a huge role in advancing research/understanding is brain donation. Rachael wrote a great blog on this - read it here! It’s a tough choice, but it’s really the missing puzzle piece. Scientists and researchers are able to use the data they collected during life and match it to a brain post-mortem. It really connects so many dots. A “deeply meaningful gift.”
Check out the list below - a great list of resources from the AFTD!
Observational Studies are the foundation for clinical trials by collecting and comparing data over time.
Clinical trials test an intervention or treatment.
The stages from preclinical to market can take an average of 15 years
Resources from AFTD
AFTD offers an overview of ways to participate in FTD research here: https://www.theaftd.org/research-clinical-trials/ways-to-participate/
The FTD Disorders Registry is the best resource to learn more and stay informed about FTD research opportunities. Persons with FTD, family members, care partners and health professionals can join to advance the science and remain informed of current opportunities.
AFTD offers a detailed overview of what is involved in brain donation here: Brain Donation
AFTD’s webinar on brain donation options can be found here: AFTD Webinar: Brain Donation
AFTD’s Senior Director of Scientific Initiatives, Penny Dacks, Phd shares information on different types of FTD research and how to participate in a past Remember Me episode. Listen here.
