The Michael J. Fox Foundation, I’ve read, is currently Facebook recruiting Ashkanazi Jews for their studies of Parkinson’s Disease. The power of social media is evident in this effort and it underscores how this form of internet activity can be used for all our benefit, not just for frivolous tidbits of little consequence to anyone.
The website The Jewish Week, notes that:
“The Parkinson’s Progression Markers Initiative, a large-scale biomarker study, is expanding to study individuals with genetic mutations associated with Parkinson’s disease.
Among those mutations is the LRRK2, which accounts for a greater number of Parkinson’s cases among certain ethnic populations and families, notably Jews of Eastern European descent.”
How successful the search for Parkinson’s on Facebook is may well turn the tide in everyone’s thinking about recruitment. Remember, recruits may or may not be given compensation for medical/psychiatric testing or else asked to “do the right thing” in advancing our knowledge of these disorders.
Reading about the deaths of a young couple with cystic fibrosis, who were the “Fault in Our Stars” models, underscores just how much knowledge we need and don’t have regarding effective treatments. The list of diseases for which we still don’t have sufficiently effective or any treatment remains long and perhaps it’s time to re-evaluate our priorities. Should we be buying bombers and warships or laboratory equipment and funding researchers? Billions are spent each year on the first and a fraction of that on medical research.
How are people recruited, usually, into studies of medical or psychiatric disorders? Most of it has been through efforts by individual clinical sites, ads in newspapers, professional journals or specific mailings to group memberships. The “mailings” may no longer be physical but through email and that’s a definite plus in terms of any clinical trial’s coffers for the study. Some of it has been successful, but not all and that’s where creativity comes in.
I had an up-close-and-personal opportunity to be educated on clinical trial enrollment a number of years ago. One group, Chinese, were missing from trials of Alzheimer’s and, in fact, there were genetic considerations at play and which made this group all that more important to study. How did the primary investigator determine to include this group?
Simple. He got in touch with colleagues in Beijing, China, arranged for a physician to come to the U.S. for one year and assigned him to a specific Chinese community in NYC. A stipend, that would have been totally inadequate for any American, was provided and the physician shared a studio apartment with a kitchen worker in the Bronx.
Each day, he brought a peanut butter sandwich with him for lunch and, at first, thought he would have to eat it with chopsticks. Quickly, he learned that it
was a hand food. I remember asking him if he ever had pink or red bananas. His eyes opened wide as he responded that he had never heard of them. Two days later, I gave him a bunch and he was brimming with joy as he told me the next day that he enjoyed them that prior night.
That’s when I got a lesson in China varied climate. He told me that in the south of China it is quite warm and tropical and they did grow bananas, but red ones? Nope, no red ones. Wonder if he brought them back home to Beijing with him.
The research was up and running at a pace not seen in other trials because this physician totally dedicated his time to enrollment and did a magnificent job. Of course, on his return he was ordered to bring back to China the most successful computer, camera and microwave oven to be studied by the Chinese engineers.
The result of his return with these items was that China, initially, developed “The Great Wall” computer. Now, of course, they’ve bought IBM’s personal computer division and renamed it Lenovo. Wonder what they did with the camera and the microwave.
After this very diligent physician went back to China, his wife was sent to the US. She was an opthalmologist who, because of her age, was seen by the Chinese government as needing a career change. They decided she would make a perfect medical librarian and sent her to the US to learn absolutely everything about it and then bring this knowledge back to China. I don’t know how things worked out for her.
The Parkinson’s studies currently underway have one thing which is in their favor; they will only recruit people, as I understand it, who have a specific gene. So, they avoid the downfall of many studies which allow for self-referrals into them. Not the best way to do studies of any kind. This type of study sampling is known as a convenience sample and gets a lot of studies completed albeit not of the best quality.
A word of advice when reading studies; begin at the Conclusion section, read the Abstract and see where they knew they may have missed the mark.