Child-Neuro:

Research Protocols Seeking Patients

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• Cerebral Palsy

• Cerebrovascular disease

  • Study of abnormal blood clotting in children with stroke (Lynch, NINDS; listed 7/06)
  • Database for stroke in infants and children (deVeber, Toronto; Lynch, NINDS, listed 7/06)

• Epilepsy

  • Pyridoxine-dependent seizures (Gospe; University of Washington; listed 8/06) 
  • Genetics of Rolandic epilepsy (Pal; Columbia Univ. School of Public Health; listed 8/06)
  • Attention impairment and childhood absence epilepsy (Blumenfeld; Yale; listed 1/07)
  • Clobazam in Patients With Lennox-Gastaut Syndrome (Multicenter; listed 11/07)
  • Diazepam Injection (Vanquix-TM) for Acute Repetitive Seizures (Multicenter; Mintz, Clinical Research Center of New Jersey; listed 11/07)
  • Atkins Diet and KetoCal for Pediatric Epilepsy (Kossoff, Hopkins; listed 6/08)
  • Epilepsy Phenome/Genome Project (Multicenter, listed 6/08)
  • Infantile Spasm Registry and Genetic Studies (Paciorkowski, Washington University, listed 9/09)

• Headaches

  • Atkins Diet for chronic daily headaches (Kossoff, Hopkins; listed 8/06)

• Infectious diseases

• Malformations

  • Holoprosencephaly (Carter Centers; listed 7/06)
  • Migrational defects (Walsh; Harvard; listed 7/06)
  • Disorders of Cerebral Development (Sherr; UCSF; revised 3/09)

• Metabolic, genetic, and miscellaneous

  • Neurodegeneration with brain iron accumulation (NBIA), including pantothenate kinase-associated neurodegeneration (PKAN) and infantile neuroaxonal dystrophy (INAD) (Hayflick; Oregon; listed 7/06)
  • Rett syndrome pathogenesis (Naidu, Hopkins; listed 10/06)
  • Rett syndrome olfactory receptor neuron model (Naidu, Hopkins; listed 10/06)
  • Rett syndrome dextromethorphan trial (Naidu, Hopkins; listed 10/06)
  • Gene Expression in Young Boys with Down Syndrome and Fragile X syndrome (Kaufmann, Hopkins; updated 1/09)
  • Clinical and immunological investigation of subtypes of autism (Swedo, NIH; listed 2/07)
  • Minocycline to treat childhood regressive autism (Neville and Swedo, NIH; listed 2/07)
  • Autism Genetic Study (Kaufman and Feinberg, Hopkins; listed 8/09)
  • Down Syndrome Behavioral Study (Kaufman, Hopkins; listed 8/09)

• Movement disorders

  • Dopamine transporter gene, SLC6A3, in children with infantile parkinsonism-dystonia (Kurian, Birmingham, UK; listed 6/09)

• Multiple sclerosis and related disorders

  • Pediatrics Multiple Sclerosis Centers (listed 7/06)
  • Iranian childhood multiple sclerosis study (Rad, Iran; listed 7/06)

• Neurocutaneous

  • Tuberous sclerosis twin study (Kwiatkowski, Harvard; listed 7/06)
  • Atkins Diet for SturgeWeber syndrome (Kossoff, Hopkins; listed 8/06)

• Neuromuscular

  • Families with siblings discordant for systemic rheumatic disorders (including myositis) (Rider, NIH; listed 7/06)
  • Extraocular muscle research (Engle; Harvard; listed 7/06)
  • Fukutin-related protein (FKRP) muscular dystrophy (Matthews, Iowa; listed 8/06)
  • Rituximab in the Treatment of Myositis (RIM) (Multicenter; Oddis, Pittsburgh, and Reed, Mayo; listed 5/07)

• Tumors

   

  To have your study listed here, send a description along with the primary investigator's name, address, phone #, fax, and email address to Steve Leber at Leber at med.umich.edu. We ask that all posted studies involving patients have approval from their local Institutional Review Boards, but we have not asked for confirmation.

  The initial listings here were taken from the brief descriptions included on the monthly Child-Neuro listserv mailing. If you'd like to send a longer description, I'd be happy to include it.

  See also:
  

• ClinicalTrials.gov, the NIH's official clinical trials list, provides regularly updated information about federally and privately supported clinical research in human volunteers.
• CenterWatch Clinical Trials Listing Service A searchable international listing of clinical research trials. Presents drug therapies newly approved by the Food and Drug Administration.

• The journal Neurology's Clinical Trials Recruiting Page

• OncoLink Clinical Trials from the National Cancer Institute and University of Pennsylvania, including brain tumor protocols.

Last revised 30-Sep-2009 by Steven Leber