Tuesday, July 26, 2011

XLH Day 2012

Save the Date: 9/8/12
Please join us for XLH Day 
hosted by Greg & Arlene Iorizzo 
and their family & friends.
More details to follow.

Thursday, May 19, 2011

Do You Have X-Linked Hypophosphatemia (XLH)?

A clinical trial is being conducted at several research centers to determine if an investigational agent from Kyowa Hakko Kirin Pharma, Inc. improves the health of adult patients by alleviating the complications associated with XLH.
Eligible participants will be provided study treatment at no charge and may receive compensation for their involvement.
To be eligible for this study you must:
  • Be at least 18 years of age;
  • Have been diagnosed with XLH; and
  • Agree not to change diet or exercise routine for the duration of the study.
Phase I is a double-blind, randomized, placebo-controlled, single-dose, dose-escalation study of KRN23 in X-linked Hypophosphatemia. This first phase is intended to assess the safety and tolerability of KRN23 after a single intravenous or subcutaneous administration in XLH patients.
Phase II is a non-randomized, open-label study intended to assess the safety and efficacy of repeated doses of KRN23 administered subcutaneously in adult subjects with X-Linked Hypophosphatemia (XLH).
Contact any of the participating study centers below for further information.

United States, California
University of California, San Francisco Medical Center
San Francisco, California, United States, 94143
Contact: Stephanie Lamp     415-476-9657     lemps@peds.ucsf.edu    
Principal Investigator: Anthony A Portale, MD            
United States, Connecticut
Yale University School of Medicine
New Haven, Connecticut, United States, 06520
Contact: Elizabeth Olear, MS, MA     203-785-3759     Elizabeth.olear@yale.edu    
Contact: Rebecca Sullivan, MS, RD     203-737-1656     becky.sullivan@yale.edu    
Principal Investigator: Thomas O. Carpenter, M.D.            
United States, Indiana
Clinical Research Center, Indiana University School of Medicine
Indianapolis, Indiana, United States, 46202-5250
Contact: Connie Sullivan, RN, CCRC     317-944-8431     csulliv1@iupui.edu    
Principal Investigator: Munro Peacock, MB            
United States, North Carolina
Duke Clinical Research Unit
Durham, North Carolina, United States, 27710
Contact: Margaret Stewart, RN     919-668-0186     margaret.a.stewart@duke.edu    
Principal Investigator: Thomas J. Weber, MD            
United States, Texas
University of Texas Health Science Center at Houston
Houston, Texas, United States, 77030
Contact: Mary D. Ruppe, MD     713-500-6901     Mary.Ruppe@uth.tmc.edu    
Principal Investigator: Mary D. Ruppe, MD            
Canada, Quebec
Shriners Hospital for Children - Canada
1529 Cedar, Montréal, Quebec, Canada, H3G 1A6
Contact: Michaela Durigova, PhD     514-282-7158     mdurigova@shriners.mcgill.ca    
Principal Investigator: Francis H. Glorieux, OC, MD, PhD            

You can also find information about this clinical trial by going tohttp://www.clinicaltrials.gov/ and searching for "KRN23". Before deciding to participate in a research study, you may want to go to http://www.clinicaltrials.gov/ and read "Understanding Clinical Trials". As always it is a good idea to confer with your doctor and/or health care professionals before entering a trial.