Natural History of CADASIL: Migraine, Diagnosis, and Misdiagnosis Study NCT01114815 

The non-profit was honored in recruiting patients for this study.  Potential patients are notified directly by us.  It will be their decision to contact the study  Coordinator if they are interesting in participating in the study. 

CTWHH wrote a letter in 2009 to The Institutional Review Board (IRB) who is in charge with reviewing all research protocols involving humans to ensure compliance with federal, state, and local regulations.  The letter informed the IRB that the non-profitis in full support of this much-needed. 

CADASIL study with New York University (NYU) Medical School “Natural History of CADASIL: Migraine, Diagnosis and Misdiagnosis.”  The non-profit's support was instrumental in having this study approved. 

The study opened March 2009
Closed July 2011

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01114815  

Swati A Sathe, MD, MS, Principal Investigator, NYU School of Medicine, Division of Neurogenetics 

The purpose of this study is to delineate early neurological features and their progression in patients with cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) in order to facilitate early diagnosis, prevent erroneous diagnosis and mistreatment and improve physician education about this relatively common yet under-recognized dementing disorder.

Patients with CADASIL suffer from a variant from migraine that differs from wild type migraine in terms of its severity, progressive nature and underlying pathophysiology. Recurrent stereotypic acute confusional state associated with the headache episodes in patients with CADASIL is a distinctive phenomenon, which if recognized will lead to an earlier and accurate diagnosis of this condition.

Specific Aims: Characterize the nature, frequency, and severity of migraine in patients with CADASIL;  Delineate the phenomenon of acute confusional migraine as a distinct subgroup of migraine and establish its prevalence in patients with CADASIL; Determine the latency between the onset of neurological symptoms including migraine, and diagnosis of CADASIL and the prevalence of misdiagnosis.

New York University School of Medicine, Division of Neurogenetics is conducting a new research study for patients with CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy).  We are inviting anyone age 18 or older with a confirmed diagnosis of CADASIL to participate. We greatly appreciate your help in this regard. Please be assured that if you participate, all the information you, your relatives or your physicians provide  will be held in strict confidence.

CADASIL is often misdiagnosed due to lack of awareness of this condition among health care providers and because the disease can closely mimic other neurological conditions. People with CADASIL struggle to find a doctor who has knowledge about this condition. The purpose of this study is to better understand the early symptoms of CADASIL so doctors may learn to diagnose it early.

If you wish to participate in this study, please call our research office. We will tell you about the project and then, if you wish to participate, will mail you the questionnaires with return envelopes. Your participation and support is deeply appreciated.

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