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Patient Recruitment, from NORD re: Mitochondria etc..


senior member
Concord, NH
Anyone considering participating in a clinical trial should discuss the matter with his or her physician. NORD does not endorse or recommend any particular studies.

Cholesteryl Ester Storage Disease (CESD)

Synageva BioPharma Corp. has initiated a clinical study to evaluate the safety, tolerability, and pharmacokinetics of SBC-102 as an enzyme replacement therapy for CESD. CESD is a late onset form of lysosomal acid lipase (LAL) deficiency, characterized by hepatomegaly, persistently abnormal liver function tests, and type II hyperlipidemia. Splenomegaly and evidence of mild hypersplenism may affect some patients. Many of the signs and symptoms are common to patients with other liver conditions. Untreated, CESD may lead to fibrosis, cirrhosis, liver failure and death. For more information contact Jennifer Burg at 781-357-9900 begin_of_the_skype_highlighting 781-357-9900 end_of_the_skype_highlighting or visit this webpage.

Ehlers-Danlos Syndrome Type IV (EDS type IV)

Researchers at the University of Washington are interested in learning more about EDS type IV (vascular EDS) pregnancies. Complications including uterine and arterial rupture, hemorrhage, and death have been reported during and after pregnancy in women with EDS type IV. A goal of the study is to develop recommendations for pregnancy management, counseling, and the route of delivery. Individuals with EDS type VI who have been pregnant may be eligible. Medical records from deceased relatives with EDS type IV who have been pregnant are also of interest. For additional information please contact:

Melanie Pepin, MS, CGC at mpepin@uw.edu or 206-543-5464 begin_of_the_skype_highlighting 206-543-5464 end_of_the_skype_highlighting or toll free (1-888-288-7362 begin_of_the_skype_highlighting 1-888-288-7362 end_of_the_skype_highlighting); Dru Leistritz, MS, CGC at Dru2@u.washington.edu or 206-543-5464 begin_of_the_skype_highlighting 206-543-5464 end_of_the_skype_highlighting or Mitzi L. Murray, MD at mlmurray@uw.edu or 206-685-5495 begin_of_the_skype_highlighting 206-685-5495 end_of_the_skype_highlighting.
(note: confidentiality of email communication can not be guaranteed)

Long QT Syndrome

A genetic counseling student at Stanford University is conducting an anonymous research survey of adults who grew up in a family affected by long QT syndrome. Researchers plan to measure the psychological impact of growing up at risk for this condition. To participate, go to:

www.surveymonkey.com/s/Long_QT_Syndrome_Survey The password to open the survey is LQTS. For more information, contact Kyla Dunn at kyladunn@stanford.edu (email preferred) or 650-724-7190 begin_of_the_skype_highlighting 650-724-7190 end_of_the_skype_highlighting, mailbox 2.

Mothers of Children with Rare or Undiagnosed Disorders

A doctoral student at the Wurzweiler School of Social Work is conducting an interview study of mothers of children under age four with a rare or undiagnosed disorder. Interviews last approximately 80 minutes and can be conducted in person, by SKYPE on the Internet, or by phone. Participants will be compensated for their time. For more information, contact Rachel Kier Reeder at rachelcnm@aol.com or 973-641-8957 begin_of_the_skype_highlighting 973-641-8957 end_of_the_skype_highlighting.