What does the PARC do?
The PARC core is the participant recruitment component of the BNCD.
The BNCD is a diverse and energetic group of scientists researching
communication and cognition in all ages of persons ranging from infants
through senior citizens. The PARC core helps BNCD investigators identify
and recruit participants for research studies as well as maintains
a repository on persons wishing to be in future studies. Persons in
our participant pool will receive periodic mailings, such as birthday
cards and newsletters with activities and stories on current research
within the BNCD.
What types of participants is the PARC core looking for?
Individuals and families who participate in research play a vital
role in the research process. The PARC core is always looking for
a pool of participants of all ages interested in being in a future
research study. We are looking for typically developing persons, as
well as individuals with a particular developmental disability.
How can I sign up to be in a research study?
If you are interested in being in a study for yourself or your child,
or if you have more questions, please contact the PARC Research Coordinator
using the information on the upper left of this page.
What is a research study and why is research done?
A research study is a project designed to answer questions and gather
information about a specific topic. At the BNCD, research studies
focus on how we communicate and what affects the communication process.
Knowledge gained from research studies will be disseminated to other
professionals, such as training speech language pathologists, teachers,
psychologists, communication experts, linguists, as well as help guide
policymakers.
What standards for research are in place?
All research studies are reviewed and conducted according to strict
federal standards for research involving human participants and are
approved by the Human Subjects Committee-Lawrence, the University
of Kansas's Institutional Review Board. Additionally, anyone who takes
part in a research study will go through a process called Informed
Consent. This process ensures the participant will be told exactly
what the study is about before they can begin. If the participant
agrees to be in the study, he or she will sign a consent form and
receive a copy of the consent form to keep. A participant must be
at least 18 years of age to sign it, or, if someone is under 18, their
parent or legal guardian must sign the consent form on their behalf.
How much time will being in a research study take?
Research studies last for varying lengths of time. Although the entire
research project may be quite lengthy, your participation time is
often only 30 minutes to one hour per session. Some research projects
may ask you to participate in only one session and other projects
may ask you to return for several sessions. The researcher will let
you know how much time is expected before you agree to take part in
the research project.
Who can participate in research studies?
Researchers have specific criteria for persons in their study. A
researcher may need only people who are of a certain age or who have
a specific condition, or both. For example, if a researcher is investigating
how hearing loss affects speech in older adults, the investigator
may request that only adults over age 60 who have hearing loss participate.
Other studies may involve only typically developing preschoolers to
understand how language is acquired. Some studies look for participants
with an identifiable condition, such as a specific language impairment.
Research studies have a certain number of participants, so it is possible
that not all persons who meet the criteria would be selected.
What will I (or my child) have to do in a research
study?
Before you begin the study, the researcher will fully inform you
of what you can expect to do as part of the study. In general, however,
participants in the research study normally take part in an activity,
which may be reading words or parts of words, responding to an image
on a screen, or playing a game. There are no wrong answers and no
one "fails" a research study.
What happens with my (or my child's) study results?
No research study looks at the results of just one person. Researchers
combine the scores of many participants to get an idea of what the
average or typical response might be in the population studied. No
information that would identify anyone will be released through the
results of the study and all scores remain confidential.
Can I (or my child) quit a study once it has started?
Absolutely! Anyone in a study can quit at any time with no penalty.
We want you to understand what the study is about and we encourage
you to ask questions about the study process before, during, or after
the study.
Will I (or my child) receive treatment as part of the study?
The BNCD does not provide treatment as part of the study or as part
of the center's services. If you are concerned about a problem you
or your child is having, the researcher may be able to inform you
about treatment options in your area. Your family physician may also
be a good source of information.
How will I (or my child) benefit from participating in a study?
Some research studies do provide a direct benefit for the person
participating in the study. While other studies may not seem to provide
a direct benefit to the participant, the participants provide valuable
information about the topic of study which will in turn help others
in our society. The information provided by participants will be used
for a number of purposes including increasing society's understanding
of the issue, helping current and future professionals to create or
modify existing treatment programs, and help researchers to identify
the causes and effects of certain disorders.
Do I (or my child) get paid for participating in a study?
Some, but not all, of the projects at the BNCD provide a small compensation
or token of appreciation for the participant's time when taking part
in a research project. If you are selected to participate in the study,
the researcher will inform you if there is compensation.
Can I (or my child) participate in multiple studies?
Generally speaking, yes. The researcher may ask you or your child
if you have been in any previous studies which might affect the results
of another research study
What types of PARC services are available for BNCD researchers?
The PARC core helps BNCD investigators locate potential participants
through community outreach, census and other data queries, and through
participant databases. The PARC Coordinator can help the investigator
locate the most appropriate ways and places to recruit subjects for
research projects. The PARC coordinator also acts as a liaison with
the Human Subjects Committee-Lawrence to help investigators be aware
of pertinent developments in the area of human subjects’ privacy
and protection.
What types of organizational information is available on potential
participant sites?
The PARC coordinator maintains demographic and contact information
on many organizations that serve as potential recruiting sites, such
as schools and school districts, preschool centers, and other community
and service organizations.
What types of participant data are available?
The PARC coordinator maintains a database of individuals who are
interested in participating in future research studies, thus saving
costs that would be incurred in recruiting new participants. And,
since many of these individuals have already participated in a study
in the BNCD, unique longitudinal evaluations can be generated. Additionally,
the PARC coordinator has birth registries available to serve as a
source for preliminary contact for research studies.
What types of data querying and mapping services are available?
The PARC coordinator can take data from sources such as the US Census
Bureau or the state department of education and map the results using
a geographic information system to visually identify appropriate recruitment
areas.
How do I access these services?
Contact the PARC coordinator to discuss what your needs
are and how the PARC core can best fulfill them.
