I am interested in hearing from Juvenation readers about ideas on how to recruit Type 1 diabetics (first ten weeks) for research studies. How can these folks be recruited, even while dealing with the shock and confusion of the diagnosis? How can we get the patient to volunteer so quickly?
What would help the doctors and nurses feel comfortable asking for the patient to volunteer so soon after diagnosis?
I would also like to hear from diabetics and parents what they have learned since those early days that they wish someone had told them early on. What do you wish someone had told you?
I will tell you the one thing I wish they hadnt said "she will live a normal life" it is insulting at this point. Nothing about injecting your child multiple times a day is normal. Telling your child she cant eat this or that because the way her body reacts to it is normal. Telling your child she needs to wait to eat because her numbers are to high is normal. Nothing about having to wake up in the middle of the night to treat a low is normal. Knowing even tho its a slim chance she might pass this on to her kids one day is not normal.
I am interested in hearing from Juvenation readers about ideas on how to recruit Type 1 diabetics (first ten weeks) for research studies. How can these folks be recruited, even while dealing with the shock and confusion of the diagnosis? How can we get the patient to volunteer so quickly? [/quote]
well I guess you would have to be installed in the hospitals, or at least tapped in to endocrinologists in the area. Most patients and parents are frightened, angry, and desperate. If you had a relevant, helpful research study (extending the life of beta cells, etc.) I don't see an issue with finding participants. If you are researching magnetic forces and voodoo..... perhaps another story
[quote user="Chris Stiehl"]
What would help the doctors and nurses feel comfortable asking for the patient to volunteer so soon after diagnosis?[/quote]
a research plan and details of the medical relevance, the science, the design of the test.
[quote user="Chris Stiehl"]I would also like to hear from diabetics and parents what they have learned since those early days that they wish someone had told them early on. What do you wish someone had told you? [/quote] since the early days? (I am from the renaissance era) you mean over 30 years ago? wow maybe we could talk over a beer or something. What would I have liked to hear: that it wont get easier... it just becomes more routine. As far as normal life (from above).... show me a normal life. there's no such thing. we all have our crosses tro bear, no one has it easier or harder than anybody. belief that I have it "really bad" only harbours resentment - and I like being happy. I was told that I would live to my 30's but not to worry because a cure was right around the corner. good thing I have a sense of humor.
good luck on your project Chris. maybe you could throw us some clues???
When I was being diagnosed @ age 32 they ran two tests - the IGg and the amino acid that is the precursor to insulin. If you could get with labs when those tests are run you could probably capture people pretty early on. Or just pick large clinics and target clinicians who practice endocrinology. Most of us head to the experts asap on the recommendations of our GP.
The people doing the studies are reputable PhD scientists, testing ways of stopping the beta cell destruction and other treatments, attempting to find a cure or vaccine that would allow the beta cells to regenerate, among other strategies.
The problem is, by the time the patients or parents get calmed down enough to learn about the studies, it's too late. How can we get them to volunteer quickly without adding to the stress of the diagnosis?
I've had Type 1 for 50+ years. Yes, I think we should have a beer sometime!
Jessica- I agree that there is nothing "normal" about living with Type 1 diabetes. I was told in 1960 that I would die young, so I should live freely (wildly?). I shouldn't marry and definitely no kids. The docs were wrong on all counts! It's a 24-hour a day job having to think like a pancreas. There is no way that is "normal."
I don't know why there are age limits to the studies. Often, these are required by the government or whoever issues the study grant, not the researchers.
If your GP recommended a specialist, you are fortunate! Many GPs do not, even though their knowledge of Type 1 diabetes may be very outdated or limited, in my humble opinion. I am not a doctor, but I have heard from a lot of folks (parents & patients) with Type 1.
My daughter was dx'ed 6+ months ago and honestly if someone would have offered to pick up the tab for her hospital bills I might have considered her participation in a study. I was and still am stressed on how we are going to pay for our copay of her hospital stay of $3000. I really would not be or have been ready to be approached with an type of study without a intensive like that. I was so stressed out at the time about Ri and the bills it wasnt funny.
I know our family would have been thrilled to have received the information early on -- we are 6 months out and applied to be in a study as soon as we heard about it (3 months after diagnosis) & are still waiting for things on that front. My son wanted to "do something" to prevent others from getting diabetes right away - so we are doing the ride to the cure and looked into the studies. Maybe to see if the hospitals could at least put the initial information in the education packet that they provide with the comment that the family can look at it and call if they have questions. That way once people get home and are sorting things out they have the information and can pursue it if they are interested. IF the study is supported by JDRF perhaps they could have it in their new dx kit as well.
The problem is, by the time the patients or parents get calmed down enough to learn about the studies, it's too late. How can we get them to volunteer quickly without adding to the stress of the diagnosis?
I've had Type 1 for 50+ years. Yes, I think we should have a beer sometime!
-Chris [/quote]
Offering help to a desperate person should attract plenty of attention, so my guess is the breakdown (or lack) of communication. No one knows what Type 1 is. That's apparent from the silly things people say about the disease. I don't blame them. I don't know a darn thing about Duchenne muscular dystrophy (as a poor example).
Advertisement to people who are not sick is difficult, because it's hard to get them to pay attention. There is a lack of concern. There are other problems to worry about. I think the key is to get endos and hospitals the information, and have a network of established data (a website for example) where information can be kept current and studies can be updated AND AVAILABLE to folks who are admitted to the hospital.
this is probably a good "six sigma" type project for detailed analysis.
congrats on the hard work and dedication of surviving the dark ages. I travel for work, & live in Jersey. If you let me know your city I'll look you up!
Some of the studies are sponsored by JDRF, while some are not. The ones that are nto, are often funding through the NIH special diabetes funding that JDRF fights for from the Federal Government every couple of years (my wife heads up that effort). Looking back, would the funding by JDRF have influenced you to participate? You probably didn't know who JDRF was, did you, at diagnosis?
What do you know now that you wish you had known in the first 10 weeks?
My daughter is 5 weeks past diagnosis and she was diagnosed early. I think we would volunteer. I have asked the Cleveland CLinic about studies and they have not been very helpful. I have done searches on line and see nothing nearby.
When I was diagnosed, I was given (with my consent) a pneumonia vaccine and a flu vaccine. Then, as i looked at studies, I saw that for most of them you could not have had any vaccinations for the last six months. I wish someone had told me that, in getting the flu and pneumonia vaccine, i was ruining my chances to participate in research studies.