Characteristics of Idiopathic Familial Speech Disorders
United States375 participantsStarted 1996-05-22
Plain-language summary
According to studies, speech disorders with unknown causes (idiopathic) affect approximately 5% of the population at some point in their life. Some of these disorders like, stuttering and cluttering, are known for being detected early, during speech development.
Stuttering is characterized by sound and syllable repetitions and consonant/vowel prolongations. When stuttering is moderate to severe, it can interfere with a person's job and social activities.
Speech articulation disorders are characterized by omissions, or substitutions of speech sounds. The speech of a person who clutters is often difficult to understand. People are often unaware of the errors they make when speaking causing treatment of the condition to be very difficult.
The purpose of this research is to study an extended family whose members exhibit a pure form of speech articulation disorders
In addition, the study will use data and information gathered from the study and use it to develop guidelines (criteria) for defining and differentiating patients with speech disorders.
Who can participate
Sex
ALL
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
-INCLUSION CRITERIA:
i. Normal Language Development, Hearing and Cognition
ii. The following screening tests previously published with norms were found to have a good distribution for determining normal functioning in adolescents and adults as all subjects did not hit ceiling and all had scores greater than or equal to the 80th percentile. These tests are being used to ensure that subjects affected with stuttering or FPPD do not have other disorders such as hearing loss, language delay, or mental retardation.
Peabody Picture Vocabulary Test III (PPVT-III)
Expressive Vocabulary Test (EVT)
Oral Speech Mechanism Screening Examination
Revised Token Test; Token test for Children
Test of Non verbal intelligence (TONI-2)
Digit Span subtest of the WICS-R
Audiometric Screening
Goldman Fristoe Test of Articulation
WUG Test of Morphological Encoding
Test of Auditory Comprehension of Language (TACL)
Khan-Lewis Phonological Analysis
INCLUSION CRITERIA FOR IDENTIFYING AND QUANTIFYING STUTTERING:
The Stuttering Severity Index -3 (Riley, 1981) has been found to be accurate for identifying and assessing the severity of stuttering during conversational speech. For the inclusion of a stuttering subject we require:
i. A total overall score of 11 or greater between 3 and 17 years,
ii. A total overall score of 18 or greater from age 18 and above.
INCLUSION CRITERIA FOR IDENTIFYING FPPD:
i. A family history of an autosomal dominant pattern of inheritance of the speech disorder ov…
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Trial details
NCT IDNCT00001551
SponsorNational Institute of Neurological Disorders and Stroke (NINDS)