• What studies are currently being done through the BNCD?
• What does the PARC do?
• What types of participants is the PARC looking for?
• How can I sign up to be in a research study?
General questions on research studies:
• What is a research study and why is research done?
• What standards for research are in place?
• How much time will being in a study take?
• Who can participate in research studies?
• What will I (or my child) have to do in a research study?
• What happens to my (or my child's) study results?
• Can I (or my child) quit a study once the study has started?
• Will I (or my child) receive treatment as part of the study?
• How will I (or my child) benefit from participating in a study?
• Do I (or my child) get paid for participating in a study?
• Can I (or my child) participate in multiple studies?
Questions for BNCD Investigators:
• What types of PARC services are available for BNCD investigators?
• What types of organizational information is available on potential participant sites?
• What types of participant data are available?
• What types of data querying and mapping services are available?
• How do I access these services?
What studies are currently being done through the BNCD?
There are many exciting studies being done by our researchers, including trying to understand and learn:
what infants know
how to help premature babies learn to suck properly
how children develop and process speech
why some children develop speech differently than other children
how children with developmental disabilities communicate
the types of hearing loss
effects and causes of age stereotyping
language and cognitive changes among older adults
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 contact information on the Contact PARC page: http://bncd.drupal.ku.edu/contact-parc.
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.