Steven Taylor: "Research Update"
Encouraged us to talk about SJS: if people don?t know about it, there's no push to cure it, no money to fund research, no awareness of its significance.
General overview of research funding
Guidelines for treatment exist for all top ten AI disease EXCEPT SJS (b/c it's too complicated; they'd have to work with other specialists); they are working on evidence-based research
Some people are upset that the SSF has taken over creating the guidelines and disagree w/ their recommendations (same thing with classification/diagnosis criteria created by SSF)
Working with pharm companies to set up clinical trials (of off-label use of meds and promising compounds)
1. Convince them we?re a big enough group
2. Convince them that we?ll take the drug
3. They need to believe they?ll make a profit
4. Convince them that we have enough burden of illness to need medication
No one is looking at what diseases don't have drugs to treat them. More and more drugs are produced for the same illnesses. We need to fight for drugs for the diseases we represent.
Showing an interest in clinical trials (even if you don?t end up participating) at least proves we're interested; call the doctor to learn more when there's a clinical trial
Dr. Donshik is doing a dry-eye clinical trial starting in November. Call and leave a message re: his clinical trial to express interest.