Natural History Studies
Have you or a loved one been diagnosed with LBSL? Researchers would like to assess your clinical symptoms in order to expand knowledge of this disorder in the medical community. They hope this research can clarify the common and clinically important symptoms that should be targeted for new treatments. For more information about participating in an LBSL natural history study, please click here.
United States
Baltimore, Maryland: Kennedy Krieger Institute / Johns Hopkins Medicine
Principal Investigators: Dr. Ali Fatemi and Dr. Amena Smith Fine
Contact: Amena Smith Fine, finea@kennedykrieger.org
Study Listing: ClinicalTrials.gov
Netherlands
Amsterdam: Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)
Principal Investigators: Dr. Marc Engelen
Contact: Marije Voermans, RN, 0205668227, m.m.voermans@amsterdamumc.nl
Study Listing: ClinicalTrials.gov
Finland
Helsinki, University of Helsinki
Principal Investigator: Dr. Emil Ylikallio
Contact: emil.ylikallio@helsinki.fi
Brazil
Curitiba - State of Paraná, Brazil, Hospital Pequeno Príncipe
Principal Investigators: Dra. Josiane de Souza
Contact: josiane.souza@hpp.gov.br
Primary US Site
Kennedy Krieger Institute / Johns Hopkins Medicine (Maryland, USA)
Investigators: Dr. Ali Fatemi and Dr. Amena Smith Fine
International Sites
Amsterdam University Medical Center (Netherlands)
Investigator: Dr. Marc Engelen
University of Helsinki (Finland)
Investigator: Dr. Emil Ylikallio
Eligibility
Do you or your child have a diagnosis of LBSL?
Is this diagnosis based on genetic testing?
Do you have regular access to the Internet?
If yes, then you may be eligible to participate in this study!
Contact
Dr. S Ali Fatemi - Principal Investigator
+1.443-923-2769
+1.443-923-1820
FineA@kennedykrieger.org