Module 10

Module 10g: Clinical Trials

Moico Module 9 Alt
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)
NoCodeQuestionResponse
11.2.1ANGOtherStudyWhatNEWName 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 

11.2.2ANGOtherStudyOther2Name of study/ trial 
11.2.3ANGOtherStudyPartAre you still participating in other study/ trial?1 – Yes;
2 – No
11.2.4MinocyclineTrialAAre you still participating in the Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome)?1 – Yes;
2 – No
11.2.5MinocyclineTrialBAre 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
11.2.6MRITrialAAre you still participating in the MRI trial at Baylor College of Medicine?1 – Yes;
2 – No
11.2.7MRITrialBAre you still participating in the MRI trial at UNC?1 – Yes;
2 – No
11.2.8GaitTrialAre you still participating in the Gait trial at the University of South Florida?1 – Yes;
2 – No
11.2.9LenaTrialAre you still participating in the Lena device trial at the University of South Florida?1 – Yes;
2 – No
11.2.10SleepTrialAre you still participating in the Sleep trial at Kansas?1 – Yes;
2 – No
11.2.11DisNutYNAre you still participating in the Disruptive Nutrition FANS/ketone trial?1 – Yes;
2 – No
11.2.12GeneTXYNAre you still participating in the GeneTX KIK-AS trial?1 – Yes;
2 – No
11.2.13FREESIASYNAre you still participating in the Roche & Genetech FREESIAS Endpoint Study?1 – Yes;
2 – No
11.2.14TangeloYNAre you still participating in the Roche Tangelo Clinical trial?1 – Yes;
2 – No
11.2.15BrainTrialAre you still participating in the Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang)1 – Yes;
2 – No
11.2.17NaturalHistSiteNewWhich 2018-current Natural History Study site?1 – Rady Children’s Hospital, San Diego, CA;
2 – Children’s Hospital, Boston;
3 – Other
11.2.18NaturalHistSiteNewOthIf other, please state 
11.2.19NaturalHistYNAre you still participating in the Natural History Study?1 – Yes;
2 – No
11.2.20FolicBetaineSiteWhich 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);

11.2.21FolicBetaineYNre you still participating in the Folic Acid/Betaine Trial?1 – Yes;
2 – No
11.2.22MetafolinSiteWhich 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);

11.2.23MetafolinYNAre you still participating in the Metafolin Trial?1 – Yes;
2 – No
11.2.24LevodopaSiteWhich 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);

11.2.25LevodopaYNAre you still participating in the Levodopa Trial?1 – Yes;
2 – No
11.2.26OvidTrialSiteWhich 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);

11.2.27OvidTrialYNAre you still participating in the Ovid Trial?1 – Yes;
2 – No
11.2.28OvidSTARSsite

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

11.2.29OvidSTARSTrialYNAre you still participating in the Ovid STARS Trial?1 – Yes;
2 – No
Providing Insight & Research into Angelman Syndrome
Creating new opportunities, insight & understanding.
Hi Holding Hands
Hi Patient Data

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