First off I am really sorry you and your husband have to be dealing with this.
As someone who has been part of two clinical trials you have to know that I feel they are important. But remember clinical trials are often more about medical knowledge than for potential for cure or life extension. Having said that who knows, when there was a breakthrough someone was in that clinical trial. Just be grounded in the fact that for every one that sees results there are much more that do not.
I would advise anyone thinking of doing so to ask the important questions. Know that the people involved need to recruit to get the job done they will not lie to you but you have to ask the questions often to get the answers. Clinical trials are about gathering information not about your treatment needs per-say and are often paid for by drug companies. It is your job to make sure that it is in your best interest to take part in it.
The first question I would ask is what phase is this trial?
Phase 1 trials are based on an idea and they are often checking for tolerance and dosage if it has potential they will progress to the next phase. If it is say a phase 4 trial ask them for results from the previous trials. A phase 4 clinical trial in other words might hold more potential than a phase 1.
The second question would be is this a blind trial? Some Clinical trials divide participants into groups. Some may get one drug others another or a placebo.
The third question would be what do you think the benefit could be to me if I participate? The answer could be simply to extend life a few weeks or months more.
The forth question would be what are the dangers to me. Could participation shorten my life or severely affect my quality of life?
As for consultations the only online one that does bladder cancer that I know of is MA General Hospital in Boston. Your are already dealing with some of the top now so that would not probably be of a lot of use to you. I would call MD Anderson and talk to them about reviewing your husband case. I have known cases where people were treated close to home using the protocol prescribed by a major center gotten through consultation. Also Anderson is a mecca for research and they would be a good resource in that way.
No matter what you do one of the most important things you need to talk to your doctors about is palliative care. Pain management and side effect management will play a very important part in your husband quality of life.
Here is a link talking about palliative care
www.getpalliativecare.org/
Here is a link to Clinicaltrials.gov information and a list of questions to ask.
www.cancer.gov/clinicaltrials/search
Here is a link to National Cancer Institutes clinical trial finder if you wish to look for other trials that maybe available.
www.cancer.gov/clinicaltrials/search
I hope I have not thrown to much information at you. I also hope that none of this seems to harshly put but this is a time you need the bottom line. We are here if you have more questions or just need to talk. Know that I am sending you both a hug.