 Clinical
Research Is Not For Guinea Pigs
Why Should I Volunteer to Participate in a Research Study?
Every day in our busy lives, we are asked to give something for
the benefit of mankind. We may be asked for financial donations
to support the local high schools or community teams. We may be
asked to reach into our pockets to give freely at churches and
synagogues, bake sales, car washes, or fund raisers. We are frequently
being asked for donations to eradicate cancer, multiple sclerosis,
muscular dystrophy and other devastating diseases. We’re
asked for food donations, old cars, used cell phones, etc. We
are often encouraged to help out for specific situations such
as donating blood, giving clothing to a family who lost their
home in a fire, or provide shelter for those in need. On a larger
scale, our help may be needed in rescue attempts or clean-up from
natural disasters or rebuilding to put lives back in order. Be
it material, money, time or energy, giving is volunteering and
volunteering is the ultimate gift each one of us can provide!
Clinical research is another way to volunteer your time and services
to advance the knowledge of a specific medical question. Clinical
research is building blocks; collecting similar information one
patient at a time to clearly understand an issue. The answers
provide us with better treatments, choices and outcomes for all
patients. Whether it’s knowing how many people are suffering
from one particular disease or how best to treat an ailment, or
to what extent an individual would be affected by a certain symptom
in the general population, clinical research is the foundation
of collecting and understanding medical information and making
it available for the entire world to use. Society benefits from
each and every participant in one way or another.
There are many different reasons to begin a study. First you
need to identify the question. Second, you need to design a protocol
or a set of guidelines to help answer that question. Third, you
need to collect, organize and analyze your data. And fourth, you
must report your findings. Careful thought goes into the design
of each study. A search is performed to determine whether similar
work has already been done. This helps to improve the study design
by eliminating flaws from trials previously reported. There are
many more aspects involved in conducting a study, such as paying
for the project, finding study participants and ensuring all the
rules are followed appropriately. In the end, though, knowledge
and education is the goal to benefit mankind.
You may be asked to participate in a Clinical Research Study
one day. The important factors for you to consider are:
- Do I understand everything I need to know?
- What are my risks?
- What are my benefits?
- What are my options?
All of these questions should be clearly understood before you
agree to volunteer. As a study participant, you may not gain obvious
benefit from your participation. However, you will most certainly
obtain a significant amount of education while spending time with
study personnel whose job it is to work with the patient, the
doctor and the study sponsor. You may receive medication or treatment,
you may only be asked to respond to specific questions. You may
need to stay involved for one year, maybe longer or your participation
may last only one day. Some participants try out new testing equipment,
some try new medications or new surgery techniques. At times we
may be comparing treatments or medications to see if one is superior
over the other. Some studies are designed to measure how well
patients are progressing, other studies are designed to test how
well each doctor performs certain tasks compared to their peers.
Long ago a young teacher set out to help a child desperately
in need. Anne Sullivan didn’t realize at the time how influential
her experiences with Helen Keller would be for future generations.
In the same way, your experiences as a patient and a study subject
may help many others.
Research is the collection of information, used to build the
foundation for learning. It provides the tools for knowing what
works and what doesn’t work. Remember, clinical research
is not for guinea pigs. Those hairy little creatures just don’t
have what it takes to be a volunteer.
If you or someone you know are interested in learning about eligibility
for one of our clinical trials, please call Jeanne Molineaux (215)825-4713
or Sheryl Wizov (215)928-3221. A thorough eye examination with
one of our glaucoma physicians is necessary. This may or may not
be covered by your medical insurance.
The Glaucoma Research Center - Wills Eye Institute
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