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Strategic Plan: Plain Language Version FY 2003-2005
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What Is the NIDCD?
In 1988, Congress established the National Institute on Deafness and Other Communication Disorders (NIDCD) as a separate institute within the National Institutes of Health (NIH). The NIDCD conducts and supports research and research training in the areas of hearing, balance, smell, taste, voice, speech and language, along with their associated disorders. These processes of sensing and interpreting are fundamental to the way individuals perceive the world around them and to their ability to communicate effectively.
Over the past few years, NIDCD-supported scientists have made remarkable progress in research on human communication and its disorders. This progress was accelerated by related research supported by other institutes at the NIH. This combined effort has provided the foundation for current and future research to achieve the Institute’s important goal of improving the lives of individuals with communication disorders.
In January and February of 1999, the NIDCD convened a group of 18 experts to help formulate a Strategic Plan for the Institute for Fiscal Years 2000-2002. This Strategic Planning Group, comprised of scientists and other members of the public, was asked to identify areas of research that fell within the parameters of the Institute’s mission. They reviewed all the research supported by the NIDCD as well as other NIH-wide scientific initiatives. In addition, oral presentations and written statements from public organizations interested in research supported by NIDCD were given so that the public’s perspective could help to shape the Strategic Plan. The final draft of the plan was discussed in detail at the NIDCD Advisory Council meeting on May 27, 1999. To keep current with the state-of-the-science and with advances in the field, the National Deafness and Other Communication Disorders Advisory Council reviewed and updated the scientific version of the Strategic Plan at its January 18, 2002, meeting. The scientific version became the basis for the plain language version. Below are highlights of the extraordinary research opportunities and compelling needs of individuals who have communication disorders.
What Communication Disorders Does NIDCD Study?
Having good communication and technological skills has become a necessity for all Americans. The labor force of the 21st century requires intense use of these vital skills. However, each day is a challenge for the 1 in 6 Americans who has a communication disability and for their families. For them, the simple acts of speaking, listening, and making wants and needs understood are often impossible.
Communication disorders greatly affect education, employment and the well being of many Americans.
Birth and Early Childhood
What Research Progress Has Been Made?
What Needs to Be Studied. Although many discoveries and advancements have been developed to help people with communication challenges, much more work remains to be done. For example, more studies are needed to help answer the following questions:
With help from scientists and the public, the NIDCD has identified four research areas that offer extraordinary research opportunities in the field of human communication sciences:
These four research areas are described in greater depth in the following section. A detailed list of NIDCD’s research priorities is included for each area.
I. Determine the Molecular and Epidemiological Bases of Normal and Disordered Communication Processes
There is a need to determine the factors that contribute to or cause normal and disordered communication processes in order to develop better interventions, devices or cures. Scientists now know that genes and cellular proteins play a key role in many communication diseases and disorders; however, this area of research requires much more intense study. More advanced research is also needed on non-genetic factors, such as infection and environmental noise, which also impact communication processes.
Understanding Molecular Causes
One of the most promising areas of research today is called structural and functional genomics, which is the identification and study of the function of human genes. Scientists estimate that humans have between 30,000 and 40,000 different genes. As research advances and scientists and doctors learn more about the human genome, it will become easier to identify which genes are involved in human communication and its disorders. It is also important to note that much of the success and progress in genomics is a direct result of the willingness and generosity of families with hereditary communication disorders who agree to participate in studies with clinicians and scientists. Clearly without them, research in this field would not be as advanced as it is now.
As the work of the Human Genome Project nears completion, another exciting new field called Proteomics is emerging. Proteomics is the study of how proteins interact between and within cells. Why is this important to understanding human communication disorders? It is because genes contain all the information needed to make proteins. These proteins are the building blocks that determine the structure and function of all living cells. The cells, in turn, form every internal system in the human body. Scientists now have the ability to identify which genes produce a certain protein. However, it is also important for them to know if mutations (changes) in those genes lead to disease because of the loss of a particular protein function. Mutations in a few genes or even in one gene can have a dramatic effect on complex functions like hearing, balance, smell, taste, voice, speech and language. Studying proteins allows scientists to identify and understand newly discovered cellular processes that are essential for effective human communication. Once fully understood, these genes and proteins may someday be targets for new treatments.
Mutations in genes contribute to many communication disorders, in some cases directly by causing a critical group of cells to malfunction, and in other cases indirectly by increasing the body’s sensitivity to damage from infections or environmental factors such as noise, drugs and medications. Continued research to identify genes and their function may make it possible for doctors to more accurately diagnose and classify individuals with communication disorders. The hope is that in the future, doctors will be able to make these decisions based only on symptoms or observed gene mutations. This knowledge can also be used in the clinical environment. For example, children diagnosed with a mild hearing loss at birth and who have a gene mutation that will cause progressive hearing loss and deafness by their teen years may receive and benefit from early education programs so that they may function at a higher level in the future.
Complex and interconnected genetic traits make some communication disorders difficult to understand. Some disorders are extremely complex because a multitude of factors can contribute to their origin. In some cases, many genes are involved; in others, a single underlying problem has multiple effects; in still others, small defects in individual genes work to negatively affect a person’s susceptibility to a disorder. Therefore, scientists need to understand the complex interactions of these genetic factors. Such increased knowledge could lead to effective prevention and treatment strategies.
Understanding Non-Genetic Causes
Not all communication disorders have a genetic basis. For example, hearing loss can occur as a result of infections, noise damage or toxicity associated with certain medications. Hearing loss in infants can result in difficulty learning to speak or understand language later in life, if appropriate education and training are not provided. At any age, impaired language skills affect the ability to function in today’s complex, communication-driven society. Besides childhood hearing disorders, language impairments can also be caused by an injury to the brain or a problem in brain development. Diseases of the larynx can be caused by infections or by the presence of a tumor. More research is needed to identify other non-genetic causes of communication disorders.
Strategic Plan Research Agenda -- Priority Area I
Research is needed to help determine the molecular (proteomic and genomic) and non-genetic (infection and environmental) bases of communication processes in the following areas:
II. Study the Development, Deterioration, Regeneration and Plasticity of Processes Mediating Communication
Uncovering how the brain and the sensory organs involved in human communication recover or adapt to injury or damage is a vital research priority.
Increasing the Potential for Recovery -- How the Body Creates New Cells
Most parts of the body that are damaged by illness or injury can heal by regenerating healthy cells to replace damaged or lost ones. The ability of the central nervous system to adapt to changes is known as plasticity. For instance, when a part of the brain involved in speech and language is injured by a stroke or an infection, other parts of the brain may learn or take on that function.
Until recently, scientists believed that the highly specialized hair cells of the inner ear, which are critical for hearing and balance, could never be replaced if they were injured or destroyed. Today, discoveries in birds and some fish reveal that these same hair cells can be replaced by regenerating healthy ones. This finding has inspired hope that damaged inner ear hair cells in humans, one of the major causes of hearing loss, can also be repaired or replaced. Scientists can now focus their research on determining whether the same processes that produce the original inner ear hair cells during the development of human embryos can be duplicated or reactivated in adults.
Unlike the inner ear hair cells, the sensory nerve cells of the human olfactory system (the nose), which respond to various odors, show a remarkable ability to regenerate. Scientists need to study the unique ability of these regenerated cells to make the proper connections to brain regions that respond to specific odors. Research to identify the factors that make this possible could lead to intervention strategies that promote similar nerve cell regeneration in other parts of the nervous system.
Adults who suffer brain damage from a stroke often experience problems expressing their thoughts through speech and language. These speech and language disorders severely limit their ability to communicate and this, in turn, usually decreases their quality of life. In contrast, infants and young children who have suffered similar brain damage from birth injuries, childhood trauma, or extensive brain surgery sometimes develop or recover speech and language abilities. Additional research is needed to uncover and understand why young children can recover from severe brain damage, so that a way can be found to help adults do the same.
Early in life, sensory cells in the hearing and balance organs in the inner ear develop connections with specific brain regions. At certain times in a young child’s life, the brain is more able to form these connections. The ability to develop these critical brain connections may be lost forever if these time-sensitive opportunities are missed because sensory information is not being properly transmitted to the brain, for example, in an infant with severe hearing loss that has not been detected. Research is needed to identify these critical windows of opportunity for developing brain connections essential to communication. Important research findings in this area have already produced major public health efforts, such as screening millions of newborns for hearing loss each year.
Stem cells also offer new hope in identifying significant events in human development and tissue specification such as how an ear becomes an ear. Stem cells have the ability to regenerate and differentiate into specialized cells. If scientists understand the events that allow stem cells to differentiate (become a certain type of tissue), they may be able to use these cells for a variety of therapeutic purposes.
Strategic Plan Research Agenda -- Priority Area II
Additional research is needed to determine how cell development, deterioration, regeneration and plasticity help in the communication process, including the following areas:
III. Study Perceptual and Cognitive Processing in Normal and Disordered Communication
Obtaining a more detailed understanding of how the brain takes in information and then organizes and interprets it, is another vital NIDCD research priority.
Human communication relies on complex perceptual skills -- taking information from the outside world through the senses (hearing, vision, touch, taste and smell) and interpreting it. Human communication also requires mental abilities, such as attention and memory. Scientists do not fully understand how all of these processes work and interact, or how they malfunction when there is a communication disorder. They do know that many communication disorders occur even when the sensory organs, such as those involved in hearing, appear completely normal.
Recently, new methods have been developed to study what happens after sense organs receive information. Using computerized imaging, it is now possible to directly view parts of the brain at work. This advanced technology allows scientists to see changes as information flows from sensory organs to the brain. For example, a functional magnetic resonance imaging (fMRI) scan of the brain can be used to observe activity as language information (written, spoken or signed words) is received, processed and interpreted by the brain. Research using brain imaging techniques is now allowing scientists to challenge the old belief that there is a fixed part of the brain just for organizing language. Studies in both adults and children indicate that brain organization can be modified. After an injury either to the right or left side of the brain, the organization of language that normally takes place there begins to take place in other brain regions. For some individuals, this rerouting may allow relatively normal language abilities to continue. Scientists cannot obtain detailed information on human speech and language by studying animals, so new imaging studies involving humans is crucial.
Aside from advances in brain imaging, new methods that allow scientists to study the basic organization and operation of human communication continue to emerge. Information processing in the brain involves successive activation or stimulation of nerve cells. In other words, information moves continuously from one nerve cell to another, like electricity moving along a wire. This activation takes place when chemicals in one nerve cell are released and stimulate activity in the next nerve cell. New research has helped scientists to determine the composition of specific chemicals that stimulate adjacent nerve cells in the networks involved in human communication. This knowledge could lead to new treatments for individuals with communication disorders caused by abnormalities in critical nerve cell networks.
Strategic Plan Research Agenda -- Priority Area III
Research is needed to determine perceptual and cognitive processing (how individuals learn to communicate) in normal and disordered communication in the following areas:
IV. Develop and Improve Devices, Pharmacologic Agents and Strategies for Habilitation and Rehabilitation of Human Communication Disorders
NIDCD seeks the best ways to use new and different assistive technologies and strategies to improve the quality of life for individuals with communication disorders. As described in the previous sections, NIDCD-supported scientists have made great progress in recent years toward the goal of understanding human communication and its disorders. These advances were possible because of unprecedented breakthroughs in genetics, other basic sciences and technology. This progress is expected to continue as more genes associated with specific communication disorders are identified and their functions revealed, and as more is learned about the function of the brain and other organs important for communication.
Clinical research uses this new knowledge to study human behavior and disease. For example, hearing screening programs around the country are beginning to identify infants and young children who have significant hearing loss. The technology for screening newborns was developed as a result of basic laboratory studies that measured electrical signals from auditory (hearing) centers in the brain and tiny sounds generated by the inner ear (otoacoustic emissions). Scientists can now conduct clinical trials to find and confirm the most effective treatments (including hearing aids and cochlear implants) and the most effective education programs for hearing-impaired infants. Scientists and doctors can also determine the age when treatment should begin in order to achieve maximum success in language development.
Clinical research is also needed to describe the range of differences in human communication over an individual’s life span, such as production of speech, hearing, odor detection or balance abilities. These differences may then be related to an underlying gene or genes, which in turn may help identify individuals with a greater risk for developing problems. Once this information is obtained, clinical trials are needed to find safe and effective ways to treat specific communication disorders. These trials may evaluate medications used to treat certain diseases, laser therapy to treat cancer on the vocal folds, electrical stimulation and medications to treat ringing in the ears (tinnitus), imaging techniques to assess brain damage from stroke, and physical therapy involving special positioning of the head for loss of balance (positional vertigo).
NIDCD is committed to supporting research to develop devices that improve or restore communication abilities, or prevent communication disorders. For example:
Cochlear implants have benefited many children who were born deaf as well as individuals who became deaf later in life. Most adults who received implants have benefited greatly and many are even able to communicate effectively by telephone. Continued research on cochlear implants and sound processing is expected to improve the communication abilities of implant users and our understanding of the auditory system.
Although hearing aid technology has advanced rapidly over the past few decades, the various hearing aids available still do not work well in real world situations where sound comes from more than one source. They are also not particularly effective when a listener tries to pay attention to a single speech sound among competing speech sources (as in meetings, and at banquets and sporting events). To meet these needs, scientists are working on directional hearing aids that will help users focus on and understand speech from specific sources within a noisy environment.
Oral communication may not be straight forward for individuals with severe speech impairments caused by muscular dysfunctions (dysarthria). However, much progress has been made by scientists developing augmentative communication devices that help individuals with dysarthria to express themselves. Scientists are currently studying the conversation of people who use such devices. Additional NIDCD-funded research is also evaluating whether a low-cost, laser-activated keyboard would enable users to access personal computers. If so, individuals with disabilities could use personal computer programs and speech synthesizers to increase their communication capabilities.
Advances in basic science research and in bioengineering contributed to the development of the electro-larynx, which restores speech after the larynx is removed; digital programmable hearing aids that fit inside the ear canal; cochlear and brainstem implants, which improve the communication ability of adults and children with profound hearing loss; and video-game-like computer programs that treat disorders associated with childhood language and learning disabilities.
Although these inventions resulted from research on human communication, the ultimate success of current and future devices can be determined only by carefully designed clinical research studies that include the participation of users of the devices. Such studies are a priority for the NIDCD.
Strategic Plan Research Agenda -- Priority Area IV
Research on improving the quality of life for individuals with communication disorders through assistive devices, drugs and other therapeutic interventions includes the following areas:
Disorders of human communication affect millions of Americans. Fortunately, over the past few decades, research has greatly advanced the understanding of human communication. Intensive research has also expanded what is known about communication disorders. For example, there is a greater understanding of how information is received and interpreted in the brain and how an individual’s communication abilities can be compromised by factors such as infection, loud noise and genetic abnormalities. In addition, many new technologies to improve or restore communication abilities have been developed.
Extraordinary research opportunities led to scientific breakthroughs in the study of genes, proteins, stem cells and molecular processes that directly affect the understanding of communication disorders. New imaging techniques, electronic devices, computer databases, animal models and clinical trials have enhanced our ability to understand, prevent, diagnose and treat disorders of human communication.
The NIDCD is committed to further advancing the science of human communication and its associated disorders. NIDCD-supported research has been essential to many of these advances but much more work remains. The strategic priorities outlined in this plan provide a blueprint for future scientific initiatives aimed at improving the quality of life for individuals facing the daily challenges of living with communication disorders.