How Do I Find Out About Cerebral Palsy Clinical Trials in My Area?
In a previous blog, we covered what clinical trials are, the 4 FDA-mandated phases of a trial, the benefits and risks of participating, what current clinical trials relate to cerebral palsy and what might be involved in qualifying for one. The next step is learning how to find clinical trials in your area.
At some point it will go without saying, but the internet is your best source for finding clinical trials being conducted in your area. I took several sites for a test run and here’s what I found:
In February 2000, the federal government, through the US National Institutes of Health (NIH), launched a searchable database at clinicaltrials.gov. As of this writing, the site claimed to have details on 397 clinical trials that related to cerebral palsy (many were already labeled “complete”). The top one listed was being conducted by the University of British Columbia and involved researching pre-op and post-op “quality of life” in 24 CP patients, ages 4-18, who were undergoing a specific type of hip surgery at BC Children’s Hospital in Vancouver.
I then narrowed my search to “cerebral palsy Texas.” From 397 down to 22… 11 completed, 1 terminated, 1 not yet recruiting, 1 by invitation only. Still, I got the results I’d asked for.
The amount of information found on the link for each trial is impressive and very detailed, including a list of both inclusion and exclusion criteria for each trial.
According to their FAQ section, all funded and unfunded studies in the US must be registered with the FDA, which would imply that this database is 100% exhaustive.
Centerwatch.com was the first non-government site to publish detailed information about active clinical trials. They boast one of the largest databases of clinical trials representing more than 650 medical conditions in 58 countries. I randomly clicked on a Phase III trial, sponsored by Ipsen (a French pharmaceutical company) for Dysport® (a botulinum toxin A) that was simultaneously being conducted at numerous facilities throughout the US. “The purpose of this research study is to determine whether repeat treatments with Dysport® are safe and effective in the treatment of increased stiffness of the calf muscles and whether Dysport® can lessen the pain caused by spasticity and improve the child’s wellbeing.” Through Centerwatch, I also found studies on Botox injections (also a botulinum toxin), a study on scoliosis and one for an unnamed ankle strength training device.
There were far fewer listings on Centerwatch and the links to the studies themselves revealed less details when compared to clinicaltrials.gov (such as no inclusion or exclusion criteria). Still, a lot of good information. My feeling is that this website is great for finding clinical trials taking place outside US borders.
National Health Service
That’s right. England’s National Health Service (NHS). At first, this appeared to be one of the better databases. Despite being in England, they listed a wide cross-section of clinical trials being conducted in the United States, including 84 relating to cerebral palsy, with titles such as “Orthotics in Ambulatory Cerebral Palsy,” “Surface EMG Biofeedback for Children with Cerebral Palsy,” and “Acupuncture as Complementary Therapy for Cerebral Palsy.” There were some that I’d seen elsewhere, but many I had not.
I randomly chose “Relaxation Training to Decrease Pain and Improve Function in Adolescents with Cerebral Palsy.” The study link took me to a thorough detailing of the study… key inclusion and exclusion criteria, target sample size and contact information. The only thing I didn’t see was exactly where this trial was taking place, but there was a “link to the clinical trial website.” When I clicked it, it took me to a listing, with the exact same information, on the World Health Organization’s International Clinical Trials Registry Platform, who, in turn had a link back to the clinicaltrials.gov website.
World Health Organization
The World Health Organization’s website has a much more sophisticated “advanced search” section than I’d previously encountered. I kept it simple and just put in “cerebral palsy,” “united states” and “recruiting” in the appropriate field boxes. Unfortunately, the first study I clicked on, “Study of Vibration therapy and Hand functions in Cerebral Palsy Patients” led me to a study in India. I double checked that I’d entered “United States” and tried again. I chose a study called “Cohort of Children with Severe Cerebral Palsy” (because I had no idea what that even meant!). It took me to a study in Lyon, France. A third try took me to one in Belgium.
So, clearly the search section of this website doesn’t function as it should. Plus, it appears that on this site, as well as the NHS one listed above, all the listings for actual US clinical trials are lifted directly from the clinicaltrials.gov website. There could be exceptions, but I didn’t find any.
UCSF (University of California San Francisco) has put together a centralized directory of CP trials, updated at least twice a week.
The CPI (Cerebral Palsy International Research Foundation) does not host a database of ongoing trials, but frequently provides news items regarding innovations and upcoming trials. Good place to keep checking.
Trialsfinder.org aggressively required me to fill out a questionnaire regarding my own health before I could gain access to their site. I declined. Search Clinical Trials.org requested similar information.
My suggestion is to search “clinical trials cerebral palsy (your city) year.” I’d include the current year to avoid outdated information — once on the internet, forever on the internet.
In addition to monitoring websites, contact area hospitals and universities to find out how they go about announcing upcoming clinical trials and see if you can get on a notification list. The people conducting clinical trials are spending large amounts of money to garner the most usable information possible. You can trust that they want to attract the most qualified candidates in the area and will make their presence known.
Of equal importance, stay keyed into local and regional support groups. Make sure others in your area are aware of your desires to be informed if they hear of something before you do.
Your child’s doctors and therapists may also be able to help you find and get approved for local clinical trials.
However you chose to look for clinical trials, keep a detailed and organized record of your results so that you don’t spin your wheels and end up back at the same place over and over.