How do I keep up with the latest developments in spinal cord injury research?
It can be challenging to stay up-to-date on the latest breakthroughs in spinal cord injury care and research. Your Mary Free Bed Spinal Cord Injury Program team members are here for you, and are always willing to assist you with questions. Feel free to call Amy Arends, our spinal cord injury nurse care coordinator, at 616.242.9216 or 800.528.8989 or e-mail us at: firstname.lastname@example.org.
For those of you who have access to the internet, there are several websites we recommend. Information on spinal cord injury research may be found on several websites, such as the Christopher and Dana Reeve Foundation, National Institutes of Health, National Rehabilitation Information Center, and The Miami Project to Cure Paralysis.
You can also set up an “alert” through your favorite computer search engine, such as Google. Google Alerts are e-mail updates to your personal e-mail address of the latest search results (web, news, etc.) based on your choice of topic. You can tailor these alerts to help you monitor certain news items or keep current on events by entering keywords or phrases (e.g., spinal cord injury). It’s easy to do – just go to Google's alert page and follow the instructions.
How do I find information regarding clinical trials for people with spinal cord injuries?
The National Institutes of Health has a very comprehensive website that responds to multiple questions related to current clinical research and clinical trials. If you go to their Clinical Trials site, you can get answers to many commonly-asked questions.
If you go to the national Clinical Trials website and enter a search phrase like "spinal cord injury", you will see a registry of federally, and privately supported clinical trials conducted in the United States and around the world. This site gives you information about each trial's purpose, who may participate, locations, and phone numbers. Clicking on the specific trial you're interested in will bring up detailed information on it.
What's important to know before participating in a clinical trial, or research study?
First, it’s important to know that participating in legitimate clinical trial, or research study is different from “medical tourism." Many individuals around the world are performing different types of medical procedures, including surgeries, that are not approved in the United States, and are unsupported by true evidence-based research. Fees for these procedures vary widely, and most of them are quite expensive. Additional costs are involved with travel and lodging, taking time away from work, etc. Communication with non-English speaking healthcare professionals may be challenging, and hygiene and infection control standards in foreign hospitals may be sub-par.
Your medical insurance is unlikely to cover any expenses associated with non-FDA approved procedures that are done outside of the United States – and this may include the cost of any later medical complications experienced as a result of those procedures.
Participation in true government approved clinical trials, and research studies rarely involve fees for participants. In fact, most of them underwrite all of the costs for participation through grant funding. Participants are screened to see if they meet defined eligibility criteria, and are educated regarding all risks and benefits. Each participant signs an “informed consent” document, and can withdraw from the study at any time. Each clinical trial in the United States must be approved and monitored by an Institutional Review Board (IRB) to make sure that risks to participants are minimal and are worth any potential benefits.
What can I do to be a good candidate for an upcoming clinical trial?
The best thing you can do is remain healthy, fit, and active. Different clinical trials have varying eligibility criteria in terms of level or type of spinal cord injury, time since injury, and age, among other factors. These factors may be out of your control. However, all researchers are looking for healthy subjects who will make optimal research candidates. The best way to be a good candidate is to do what’s best for your overall health: stop smoking, limit or stop alcohol use, maintain a healthy diet and weight, exercise regularly, take the least amount of medication as recommended by your physician, and guard against the development of secondary complications (pressure sores, respiratory infections, urinary tract infections, to name a few).