Status | Study |
Completed |
Study Name: Postural Assessment in Plagiocephaly Condition: Plagiocephaly Date: 2013-11-14 Interventions: Other: Assessment The posture, motor development and balance are going to be assessed. |
Completed |
Study Name: Natural History in CCFDN and IBM Syndromes Condition: Inclusion Body Myositis, Sporadic Inclusion Body Myopathy, Autosomal-recessive Date: 2013-07-03 Interventions: Other: Natural History Assessment of natural history in IBM and CCFDN |
Recruiting |
Study Name: Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford Condition: Rare Disorders Undiagnosed Disorders Disorders of Unknown Date: 2013-02-13 |
Completed |
Study Name: Rubinstein-Taybi Syndrome: Functional Imaging and Therapeutic Trial Condition: Rubinstein-Taybi Syndrome Date: 2012-06-12 Interventions: Drug: sodium valproate sodium |
Completed |
Study Name: Mandibular Stability and Dentofacial Deformity Condition: Maxillofacial Abnormalities Date: 2011-12-02 |
Terminated |
Study Name: Study of Quality of Life in Freeman-Sheldon Syndrome and Related Conditions Condition: Arthrogryposis Craniofacial Abnormalities Date: 2011-02-27 Interventions: Other: PTSD Checklist-Specific |
Completed |
Study Name: Study of Resting and Exercising Body Functioning in Freeman-Sheldon Syndrome and Related Conditions Condition: Arthrogryposis Craniofacial Abnormalities Date: 2011-02-26 Interventions: Other: Lactate, Glucose, and Adenosine Triphosphate Blood Levels |
Completed |
Study Name: FaceBase Biorepository Condition: Craniofacial Abnormalities Cleft Lip Date: 2010-11-30 |
Recruiting |
Study Name: Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome Condition: Freeman-Sheldon Syndrome Arthrogryposis Distal Type 2A Whi Date: 2010-06-14 Interventions: Other: PTSD Checklist-Civilian (PCL-C) |
Completed |
Study Name: A Trial to Evaluate the Safety, Local Tolerability, Pharmacokinetics and Pharmacodynamics of LDE225 on Skin Basal Cell Carcinomas in Gorlin Syndrome Patients Condition: Treatment for Basal Cell Carcinomas (BCCs) in Gorlin Syndrome Patients Date: 2009-08-18 Interventions: Drug: Vehicle Placebo cream |