Let’s Participate in Research

Isn’t research done by … researchers?

Well, yes, research is designed and conducted by researchers, but research subjects are an important part of a research project.

Why would anyone want to be a research subject? None of the healthcare advances we rely on would have been possible without people volunteering to be part of research studies of the safety and effectiveness of new medications and therapies. While research subjects may not personally benefit from the research findings, others will.

All legitimate research studies are carried out under the review and approval of an Institutional Review Board (IRB). The IRB is responsible for ensuring that the rights and welfare of all research subjects are respected in the design and during the conduct of the study.

Before participating in a research study, you will be fully informed about the purpose of the research, what your participation will be, and any risks or benefits of the study from your participation. This is called informed consent.

Studies vary widely. Some are simply questionnaires. These you can usually do from home via your computer. Other studies involve working with medical professionals to try out newly developed medications or therapies. You may need to commit to going to a laboratory or doctor’s office a certain number of times. Because this type of study is more time intensive, you will most likely be compensated for participating.

You will want to weigh the risks and benefits as you decide whether to participate. If you do decide to participate in a study, remember, you can leave at any time during the process.

Once you have decided that you’re willing to be part of a research study, how do you find one to volunteer with?

Many research studies are disability-specific. Perhaps the simplest way to find out about these opportunities is to consult the national organization that supports your particular disability. Most of these large organizations maintain lists of current research studies that their members might wish to assist with.

For instance, the Amputee Coalition publishes this list online:

https://amputee-coalition.org/research/volunteer-research-opportunities/

The type of studies listed ranges from a survey about amputees’ experiences with showering and bathing prostheses (https://www.surveymonkey.com/r/AC_bathingprostheses ), to a 4-visit laboratory study of neuromuscular electrical stimulation on persons with transtibial amputation ( https://amputee-coalition.org/research/volunteer-research-opportunities/ ).

Other organizations maintain databases of research studies. A few are listed below. The World Health Organization maintains an International Clinical Trials Registry Platform:

https://www.who.int/clinical-trials-registry-platform

The US government maintains a similar international listing here:

https://clinicaltrials.gov/

The European Union maintains a list of clinical trials here:

https://www.clinicaltrialsregister.eu/ctr-search/search

For clinical trials in Africa, please see:

https://pactr.samrc.ac.za/GIS_Viewer.aspx

For more examples of research studies you might qualify to participate in, check out the posters in the Research Pavilion on Healthinfo Island. Click the poster to find out about the study and how to apply.

Here is the SLURL:

http://maps.secondlife.com/secondlife/Healthinfo%20Island/119/203/30

You will also find information about the design and operation of clinical trial studies in the Research Pavilion here:

http://maps.secondlife.com/secondlife/Healthinfo%20Island/130/217/30