Re: EC researcher - Summer 2015

There are some extra steps that I did not know may required for just dead skin samples collected at home. It may only be required if tissue biopsy samples are sent from a doctor's office, though.

"If you are going to do work on human samples, you will need to get approval from an “institutional review board”.

To find a gene mutation there are a few approaches:

- Examine the coding sequences of the genes that encode proteins - this is the exosome
- Examine the entire DNA sequence - this is whole genome analysis
- Examine the RNA sequences - this is RNA-seq

Each has its advantages and disadvantages. Each will require a certain amount of computer expertise as well as funds for paying for these steps. There may be patients groups or foundations that support work on this disease that might be willing to help fund things."

If I do not work on this research project, I would still like to find a lab that already conducts this type of research. But there will be some lab fee as with any lab tests you order. We could all put the same code on it so the lab can group the results together to find patterns. And we could see if there is a foundation (maybe a rare disease foundation) willing to cover the lab fees. It would be easier this way. What do you think?