NCT00004568 Study of Inherited Neurological Disorders
| NCT ID | NCT00004568 |
| Status | Recruiting |
| Phase | — |
| Sponsor | National Institute of Neurological Disorders and Stroke (NINDS) |
| Condition | Motor Neuron Disease |
| Study Type | OBSERVATIONAL |
| Enrollment | 3,500 participants |
| Start Date | 2000-02-18 |
| Primary Completion | — |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 3,500 participants in total. It began in 2000-02-18.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
This study is designed to learn more about the natural history of inherited neurological disorders and the role of heredity in their development. It will examine the genetics, symptoms, disease progression, treatment, and psychological and behavioral impact of diseases in the following categories: hereditary peripheral neuropathies; hereditary myopathies; muscular dystrophies; hereditary motor neuron disorders; mitochondrial myopathies; hereditary neurocognitive disorders; inherited neurological disorders without known diagnosis; and others. Many of these diseases, which affect the brain, spinal cord, muscles, and nerves, are rare and poorly understood. Children and adults of all ages with various inherited neurological disorders may be eligible for this study. Participants will undergo a detailed medical and family history, and a family tree will be drawn. They will also have a physical and neurological examination that may include blood test and urine tests, an EEG (brain wave recordings), psychological tests, and speech and language and rehabilitation evaluations. A blood sample or skin biopsy may be taken for genetic testing. Depending on the individual patient's symptoms, imaging tests such as X-rays, CT or MRI scans and muscle and nerve testing may also be done. Information from this study may provide a better understanding of the genetic underpinnings of these disorders, contributing to improved diagnosis, treatment, and genetic counseling, and perhaps leading to additional studies in these areas. ...
Eligibility Criteria
* Participants include those with inherited neurological conditions based on the training and research needs of the Neurogenetics Branch program. There is no logical limit; however, the total number of participants that can be enrolled in the protocol will be restricted. No more than 3,500 participants with either diagnosed or undiagnosed neurological conditions and their unaffected relatives will be enrolled in this evaluation and diagnostic protocol. INCLUSION CRITERIA: Participants will be eligible if they: * Have either a known or suspected, inherited neurological disease, OR are an unaffected relative (first-, second-, third, or higher degree relative) of a participant with a genetic neurological disease. * Have the ability to understand and sign an informed consent or have a parent/legal guardian to do so if they are minor children or a legal guardian to provide consent for adults without consent capacity. * Aged 2 years and above. EXCLUSION CRITERIA: Participants will not be eligible if they: -Have a systemic disease that compromises the ability to provide adequate neurologic examination or diagnosis. An example of this would be a contagious disease that would compromise our ability to do an adequate neurological exam.
Contact & Investigator
A. Reghan Foley, M.D.
PRINCIPAL INVESTIGATOR
National Institute of Neurological Disorders and Stroke (NINDS)
Frequently Asked Questions
Who can join the NCT00004568 clinical trial?
This trial is open to participants of all sexes, aged 2 Years or older, up to 120 Years, studying Motor Neuron Disease. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT00004568 currently recruiting?
Yes, NCT00004568 is actively recruiting participants. Contact the research team at schindlerab@mail.nih.gov for enrollment information.
Where is the NCT00004568 trial being conducted?
This trial is being conducted at Bethesda, United States, Bamako, Mali.
Who is sponsoring the NCT00004568 clinical trial?
NCT00004568 is sponsored by National Institute of Neurological Disorders and Stroke (NINDS). The principal investigator is A. Reghan Foley, M.D. at National Institute of Neurological Disorders and Stroke (NINDS). The trial plans to enroll 3,500 participants.