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980510 tn?1282010946

clinical trials

i came across this from the NIDS===Just thought it was interesting and might be of some help to someone and their family....

Disease Description:
Arnold-Chiari malformation is a rare inherited disorder in which the lowest part of the brain extends below the base of the skull and into the spinal canal. Many people with the disease do not have symptoms and do not know they have the condition. Others have more severe forms of the disease and can become paralyzed.

General Study Procedures:
The research studies listed below are currently open to adults and children. Minors must have approval from a parent. This study needs families with three or more members diagnosed with Arnold-Chiari malformation (Type 1). Please see the links for the procedures and eligibility criteria for specific studies. There is no cost for participation or for any tests associated with the research.

Studies Actively Recruiting Patients:

No studies available for this disease.

For more information about participating in these studies, please contact :
  
Patient Recruitment and Public Liaison Office toll-free at:
1-800-411-1222
TTY: 1-866-311-1010

For more information on Arnold Chiari Malformation:
http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Related Links:

ClinicalTrials.gov

http://patientinfo.ninds.nih.gov/DiseaseInfo.aspx?did=180&dlevel=2
7 Responses
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980510 tn?1282010946
and this link from clinicaltrials.gov

http://clinicaltrials.gov/ct2/results?term=%22Chiari Malformation %22
Helpful - 0
1175033 tn?1492201228
I called them and they said they were not taking new recruits at this time. But you can pre-sign up to be called for studies that open to patients in later studies.  Stacey
Helpful - 0
1179332 tn?1297478990
Too bad that they won't do a study on people's family to confirm whether or not other family members have it!! That's what I need, that way I wouldn't have to worry!!

Carolyn
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1179332 tn?1297478990
Just took a look at the link and it looks like they do have clinical trials to determine that...just not in Canada...*sigh* (That I can find anyway).
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620923 tn?1452915648
COMMUNITY LEADER

  BUMP
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Avatar universal
They also have a "historical" study going on that just follows the progression of syrinx and conditions predisposing u to syrinx, like chiari over 5 year period. Not sure how public that is, but I was referred into the department. Still gathering all my stuff to send in to see if I qualify. No experimental stuff but at least the treatment and MRIs they do are free. Even surgery if you need it. I would suggest calling numbers above if you are interested to see if they have any other studies u may qualify for. Not sure if they only take local people or what. Sorry I don't have much more info.
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620923 tn?1452915648
COMMUNITY LEADER

  From what I understand they will fly  u in if they feel u fit the criteria for the study....a few members have been involved in the past.....but that is all I know.
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