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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Research
CADASIL
A new study is in progress for
patients with cerebral autosomal dominant arteriopathy with subcortical infarcts
and leukoencephalopathy (CADASIL). CADASIL is a medical condition that can be
associated with stroke-like episodes before age 60 years, mental (for example,
memory problems) and behavioral (for example, mood changes) disturbances, migraine
headaches, and mental decline. Brain magnetic resonance images show changes
suggestive of a leukodystrophy (disease of brain white matter). The presenting
symptoms, age at onset, and disease progression in CADASIL vary.
Patients with CADASIL who are between 25 and 70 years of age and have cognitive
impairment are eligible to participate. The study will take place over 18 weeks.
For details, contact Gregory Pastores, MD, at New York University School of
Medicine by phone at (212) 263-8344; fax at (212) 263-8310; or email: Gregory.pastores@med.nyu.edu.
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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Previous Clinical Trials
These studies were listed earlier on this page. Contact the researchers if you would
like to know whether they are still recruiting.
CADASIL
Pelizaeus-Merzbacher Disease
Platelet Disorders
ARVC/ARVD
Immune Thrombocytopenic Purpura
Sturge-Weber Syndrome
Brain Metastases Originating from Breast Cancer
Duplication 12p
Rheumatoid Arthritis/Juvenile Rheumatoic Arthritis, Lupus, Scleroderma or Myositis
Moyamoya Disease
Prader-Willi Syndrome
Larsen Syndrome Registry and Web Site
Primary Liver Cancer
Risk Factors in Autoimmune Disease
Neuroendocrine Unit Studies at MGH
Congenital Lactic Acidosis
Hereditary Angioedema
NINDS Physicians Study Fabry's Disease
Inherited Bone Marrow Failure Disorders
Genzyme Recruiting Patients for Dose Frequency Study
Fabry Disease
Primary Ciliary Dyskinesia
Neurofibromatosis Type I
Primary Lateral Sclerosis
FENIB
Alkaptonuria
Behcet's Disease
Infantile Neuronal Ceroid Lipofuscinosis (INCL)
Turner Syndrome
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