BSN PSP/CBD Conference – Panel: Research Part 1

Moderated by Alex Klein, PhD, CurePSP


For Dr. Larry Golbe:

Q: For the cluster in France, did they really exclude any genetic causes for this cluster?

A: Can’t say they excluded it, but hopes to collect DNA from all the people and get genetic commonalities between them. It is hard to gather information from interviewing patients, and none new of any relatives with PSP.

Q: There are geographical areas with high clusters in France, but are there anywhere else?

A: We don’t know of any clear-cut PSP clusters anywhere else, but there is one in Guadalupe (not PSP). Has heard of other smaller clusters in the US that are of mining/rural areas. Can’t confirm that these are statistically significant.

Q: What is the difference between PSP Richardson’s and PSP Parkinson’s?

A: PSP Richardson’s is somewhere between 40-50% of all PSP. Classic description where eye movement problems occur in the middle, falls are the earliest signs, person doesn’t respond much to Levodopa. PSP Parkinisim is 30-40%, usually respond to Levodopa, and don’t develop eye movement problems and falls until later. More tremors, and less likely to develop cognitive problems.

Q: Are there any other environmental risk factors for PSP? What does this mean for us?

A: People with PSP are less likely to have advanced education; this could be due to many different things. People who have less educated are more likely to have a job that exposes them to more toxins, or makes them more likely to live in rural places.


For Dr. Adam Boxer:

Q: PSP sleep symptoms – what are they and what trials are underway?

A: People with PSP tend to not sleep very well at night, don’t get restful (REM) sleep. Normally, that would make people sleepy the next day, but people with PSP who don’t sleep well are not that sleepy the next day, and can’t fall asleep the next day either. Many different sleep medicines that are approved/marketed already. Trying to get to know if there is one sleep medication that is better for people with PSP.

Q: Salsalate vs. Aspirin – Which is better?

A: It’s been determined that on the tau protein there’s a chemical modification that makes it stickier and more toxic to cells. Salsalate is an inhibitor of the protein that modifies tau groups. Aspirin doesn’t do this and most likely doesn’t help much.

Q: Regarding the rehab study – what is the exercise regimen?

A: Don’t remember but it was very intensive multi-disciplinary, in-patient program, over the span of two months. Journal article can be found here:


For Dr. Richard Tsai:

Q: Regarding identifying PSP early without symptoms – how is this done?

A: Would have to rely on biomarkers (imaging, measuring proteins in the blood or CSF).

Biomarkers help detect diseases early, and looking at donated spinal fluid is very helpful in finding protein abnormalities in both symptomatic and asymptomatic patients.

Q: The tracer you mentioned is radioactive – can you comment on its level of danger?

A: Yes, it is usually made in a lab, but the radioactivity is very low and doesn’t usually last for very long. The strength is much lower, and the increased risk for cancer is <1%.


For Dr. Dianna Wheaton:

Q: 50/50 split between contact and research registry – is there an automatic flow for what you are contacted for?

A: Yes, you will get access for trials and general access, but less targeted contact if you were participating in the research registry. Additional consent to participate in research allows them to collect specific information that allows them to send the targeted email that help determine more. (if you want more interaction, you have to consent to participate in research.)


For Dr. Daniel Lee

Q: Any food science in this?

A: Not a lot of research on polyamines and neurodegenerative diseases as far as tau

Typically, you get a lot of polyamines in your diet (plants, fruits, salads etc..) The problem is that the pathway of metabolism becomes disrupted during this disease, but they are not quite sure why.