When they sent the information to me, I was dismayed to discover that they do not reimburse participants for travel or lodging expenses. I live in New Jersey and estimate that, when all is said and done, I would be out of pocket for at least 8 nights in a hotel as well as the gas and tolls for 4 trips to Maryland. Suddenly I'm not so eager to participate.
Does this seem right to you? Does Sjogren's research not get the funding that other diseases get? Does anyone know of any studies where the participants do not have to fund their own travel expenses?
Just a p.s.: Upon further inquiry I was told that the NIH does provide reimbursement for travel expenses and lodging for some studies (usually those are certain cancer studies, rare diseases, and patient populations that are small or hard to recruit for). They have no arrangements for discounted rates with local hotels (checked local hotel rates and they range from $200-$300 per night) and, for obvious reasons, I would not qualify for the "Children's Inn" guesthouse right on the NIH campus. Participation in the first study, which would verify my Sjogren's diagnosis, is the gateway into a following study which is the one in which I am really interested, the Pathogenesis and Natural History of Sjögren’s Syndrome.
The first study seems great for anyone who is struggling with getting a diagnosis, for they provide a complete range of testing (including a lip biopsy for those who need it) free of charge. If anyone reading this can get themselves to Maryland for an official diagnosis I would highly recommend it.
I did a research study about 10 years ago and their is actually a place about 20 min from me that does research. I was allergic to the med but no several people who have been in the research groups. I think they are very benificial to people. I hope some one lives close enough to check on this.
Hi Liz, I have participated in five clinical studies in Maryland(@ Hopkins). All have been with ophthalmology, I am treated there for severe dry eyes. All of them only offered free parking and a lunch voucher as “payment”. I live in PA., I know how you feel about the gas and tolls adding up. I never mind the drive to Baltimore and love my ophthalmologist, I do think she takes advantage of both of those! Due to numerous medications I can’t donate blood anymore, and due to numerous disease processes I can no longer work(was RN) so while it can be costly I try to say yes whenever asked. My husband never understands this and usually is not happy about it.
Good to hear from you! I think it's great that you participate! I'm sure they love having a nurse, as they have little to explain to you. Surely you have done your homework before you even get in the car!
If my ability to ride in a car ever improves, I think I would also take part. My main reason is that my son, and all of my grand kids have Psoriasis, and complain with back aches, dry, chapped lips, nosebleeds...
I have tried every med presented me by my trusted Rheumatologist for their benefit, hoping that my participation will some day make a difference in their health, should their complaints progress. I am ever hopeful that they will just have the skin rash, and not the arthritis! The autoimmune skipped my mom, and I am wishing and hoping the worst of it can skip them!
Always good to hear from you! Stop in when you can!
SK,people like your son and grandchildren are the reason I try to help with the clinical trials. I know it’s unlikely I myself will benefit from these trials, but possibly someone in the future could, at least that’s what I hope ! Hope your family remains healthy and free so any of the autoimmune diseases. Take care :0)
This is exactly why I want to take part in a study and am especially interested in the follow-up study on the Pathogenesis of Sjogren's. As you know, all three of my daughters battle with autoimmune issues. I can't help but sometimes feel some sense of "guilt" at having passed these issues down to them. I especially worry about what will happen when they, in turn, want to have children of their own. If I can contribute in some small way to help researchers understand more about this disease, I feel like I should do it.
I spoke with the people at NIH and have agreed to take part in the first study which can be done in one trip over the course of one or two days (so two nights in a hotel) and will include taking my full history, bloodwork, rheumatologist workup, saliva collection testing, lip biopsy, and ophthalmologist appointment with tear production testing. If accepted in the follow-up study, it would require another 3 or 4 trips so I've decided to take it as it comes and cross that bridge when/if I come to it.