Module 10g: Clinical Trials

This module is completed when entering the patient registry and updated as required. Information is collected about clinical trials and/or clinics that the participant may be involved in.

Study participation (ANGAdditionalInformation2)

No	Code	Question	Response
11.2.1	ANGOtherStudyWhatNEW	Name of study/ trial	2 – Natural History Study 2018 onward 3 – Metfolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) 4 – Levodopa Trial 5 – Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome) – University of South Florida, Tampa, FL (Ed Weeber); 6 – Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE) – Puerta de Hierro University Hospital, Spain (Belen Ruiz-Antorán); 7 – Ovid Trial; 8 – MRI trial – Baylor College of Medicine, Houston, TX (Sarika Peters); 9 – Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome); 10 – MRI trial at UNC, Chapel Hill, NC (Heather Hazlett); 11 – Gait trial – University of South Florida, Tampa, FL (Joe Grieco); 12 – Lena device trial – University of South Florida, Tampa, FL (Ruth Bahr); 13 – Sleep trial (Kansas); 14 – Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang); 15 – Disruptive Nutrition FANS/ketone trial; 16 – GeneTX KIK-AS trial; 17 – Roche & Genetech FREESIAS Endpoint Study; 18 – Roche Tangelo Clinical trial; 19 – Other
11.2.2	ANGOtherStudyOther2	Name of study/ trial
11.2.3	ANGOtherStudyPart	Are you still participating in other study/ trial?	1 – Yes; 2 – No
11.2.4	MinocyclineTrialA	Are you still participating in the Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome)?	1 – Yes; 2 – No
11.2.5	MinocyclineTrialB	Are you still participating in the Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE)?	1 – Yes; 2 – No
11.2.6	MRITrialA	Are you still participating in the MRI trial at Baylor College of Medicine?	1 – Yes; 2 – No
11.2.7	MRITrialB	Are you still participating in the MRI trial at UNC?	1 – Yes; 2 – No
11.2.8	GaitTrial	Are you still participating in the Gait trial at the University of South Florida?	1 – Yes; 2 – No
11.2.9	LenaTrial	Are you still participating in the Lena device trial at the University of South Florida?	1 – Yes; 2 – No
11.2.10	SleepTrial	Are you still participating in the Sleep trial at Kansas?	1 – Yes; 2 – No
11.2.11	DisNutYN	Are you still participating in the Disruptive Nutrition FANS/ketone trial?	1 – Yes; 2 – No
11.2.12	GeneTXYN	Are you still participating in the GeneTX KIK-AS trial?	1 – Yes; 2 – No
11.2.13	FREESIASYN	Are you still participating in the Roche & Genetech FREESIAS Endpoint Study?	1 – Yes; 2 – No
11.2.14	TangeloYN	Are you still participating in the Roche Tangelo Clinical trial?	1 – Yes; 2 – No
11.2.15	BrainTrial	Are you still participating in the Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang)	1 – Yes; 2 – No
11.2.17	NaturalHistSiteNew	Which 2018-current Natural History Study site?	1 – Rady Children’s Hospital, San Diego, CA; 2 – Children’s Hospital, Boston; 3 – Other
11.2.18	NaturalHistSiteNewOth	If other, please state
11.2.19	NaturalHistYN	Are you still participating in the Natural History Study?	1 – Yes; 2 – No
11.2.20	FolicBetaineSite	Which Folic Acid/Betaine Trial site?	1 – Baylor-Texas Children’s, Houston, TX. (Art Beaudet then Carlos Bacino); 2 – Rady Children’s Hospital, San Diego, CA (Lynne Bird); 3 – Children’s Hospital, Boston, MA (Wen-Hann Tan); 4 – Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.21	FolicBetaineYN	re you still participating in the Folic Acid/Betaine Trial?	1 – Yes; 2 – No
11.2.22	MetafolinSite	Which Metafolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) site?	1 – Baylor-Texas Children’s, Houston, TX. (Carlos Bacino); 2 – Rady Children’s Hospital, San Diego, CA (Lynne Bird); 3 – Children’s Hospital, Boston, MA (Wen-Hann Tan); 4 – Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.23	MetafolinYN	Are you still participating in the Metafolin Trial?	1 – Yes; 2 – No
11.2.24	LevodopaSite	Which Levodopa Trial site?	1 – Baylor-Texas Children’s, Houston, TX. (Carlos Bacino); 2 – Rady Children’s Hospital, San Diego, CA (Lynne Bird); 3 – Children’s Hospital, Boston, MA (Wen-Hann Tan); 4 – Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 5 – UCSF, San Francisco, CA (Anne Slavotinek); 6 – Children’s Hospital, Cincinnati, OH (Logan Wink); 7 – Vanderbilt Children’s Hospital, Nashville, TN (Greg Barnes, then Cary Fu);
11.2.25	LevodopaYN	Are you still participating in the Levodopa Trial?	1 – Yes; 2 – No
11.2.26	OvidTrialSite	Which Ovid Trial site?	1 – Baylor-Texas Children’s, Houston, TX. (Carlos Bacino); 2 – Rady Children’s Hospital, San Diego, CA (Lynne Bird); 3 – Children’s Hospital, Boston, MA (Wen-Hann Tan); 4 – Massachusetts General Hospital, Boston, MA (Ron Thibert); 5 – Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 6 – Children’s Hospital, Cincinnati, OH (Logan Wink); 7 – Vanderbilt Children’s Hospital, Nashville, TN (Kevin Haas);
11.2.27	OvidTrialYN	Are you still participating in the Ovid Trial?	1 – Yes; 2 – No
11.2.28	OvidSTARSsite	Which Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome) Site? Arizona California Florida Georgia	1 – Arizona 2 – California 3 – Florida 4 – Georgia 5 – Illinois 6 – Massachusetts 7 – Ohio 8 – Pennsylvania 9 – South Carolina 10 – Tennessee 11 – Israel
11.2.29	OvidSTARSTrialYN	Are you still participating in the Ovid STARS Trial?	1 – Yes; 2 – No

Study participation (ANGAdditionalInformation2)

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