"I feel like I've left tissue all over the country." -- Words of a man with ALS
Today there are countless opportunities for people with ALS and their healthy relatives to give blood and skin and fingernails and all kinds of tissue samples for ALS research. Unfortunately the donors are treated like renewable sources of tissue rather than valued people. Researchers who often brag that they work together all gather their own samples for their own needs. It's not about the patients. It's about their immediate research needs.
A person diagnosed with ALS is given a unique identifier on the day of diagnosis. Maybe even a nice card with a bar code is included. After that, every medical record, every blood sample, every MRI, every test result includes that identifier. A person's information and samples are suddenly connected with the person rather than with a scientist. And shortly after diagnosis, people with ALS are offered the opportunity to opt-in to a master bio-bank. The tissue isn't stored in one place, but the information about where the tissue samples reside is stored centrally. It's called patient-centric.
Think about the way your tire store can find a set of tires that fit your car overnight, even if two tires come from a warehouse in Saint Louis and two from a warehouse in Cleveland.
When a researcher or a pharmaceutical company needs a random set of blood samples from people with C9 genes, they can get them. When a researcher needs a completely random set of skin sample from people with ALS, they are accessible. When a research needs some blood from young SOD1 male PALS with slow limb-onset, they can get them.
Fix the information problem Fix the center of attention. It's the patient. Donate once, use many times.
This would be patient-centric.
Next time you hit a chuckhole and need a new tire, think about the days when Lou had to wait for the factory to make more 4.50x21s to fix the Model A.