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SJIAFoundation
Registrace 14. 02. 2017
Our mission is to find a cure for Systemic Juvenile Idiopathic Arthritis (SJIA), a serious and sometimes lethal childhood disease. We will do this by funding promising research about the causes sJIA and new treatments approaches, prioritizing research that will yield results in the next five years. We will also create a web based network and information clearinghouse for sJIA families, helping them find latest findings, clinical trials and research studies they can participate in.
The Systemic JIA foundation was founded in 2014 by Rashmi Sinha and Jonathan Boutelle, after their son was diagnosed with SJIA. We have built multiple startups together and decided that our next startup is this foundation and we want to do whatever we can to accelerate the pace of research in this field.
More info at - systemicjia.org
The Systemic JIA foundation was founded in 2014 by Rashmi Sinha and Jonathan Boutelle, after their son was diagnosed with SJIA. We have built multiple startups together and decided that our next startup is this foundation and we want to do whatever we can to accelerate the pace of research in this field.
More info at - systemicjia.org
Working Session - Accelerate Study and Natural History Study
Moderator Grant Schulert & Alexei Grom
Participants: Scott Canna, Ed Behrens, Tiphanie.Vogel, Bryce Binstadt, Lauren Henderson, Mona Riskalla, Beth Gottlieb, Randy Cron, Bas Vastert, Claudia Bracaglia
Participants: Scott Canna, Ed Behrens, Tiphanie.Vogel, Bryce Binstadt, Lauren Henderson, Mona Riskalla, Beth Gottlieb, Randy Cron, Bas Vastert, Claudia Bracaglia
zhlédnutí: 65
Video
SJIA Lung Disease Cytokine Plasticity Hypothesis - Peter Nigrovic & Bruce Binstadt
zhlédnutí 201Před 2 lety
SJIA Lung Disease Cytokine Plasticity Hypothesis - Peter Nigrovic & Bruce Binstadt
Searching for Historical Control for Refractory SJIA Trials
zhlédnutí 41Před 2 lety
Contents: Panel moderated by Grant Schulert 0:00 - Searching for historical controls in existing datasets: Bas Vastert 13:50 - Questions /Comments 27:30 - CARRA Registry Systemic JIA Data: Yuki Kimura 42:43 - Questions /Comments 49:30 - CARRA SJIA-LD Cohort Study - February 2022 update: Grant Schulert 57:50 - Questions /Comments
Patient Perspective for Lung Disease in SJIA
zhlédnutí 77Před 2 lety
Contents: 0:00 - Patients stories 7:05 - IL-18 Inhibitor (MAS825) Patient Experience 11:49 - Different medications patients are on and patients comments 20:03 - Questions / General comments
Summary of Challenges in Refractory SJIA Trials - Rashmi Sinha
zhlédnutí 33Před 2 lety
Summary of Challenges in Refractory SJIA Trials - Rashmi Sinha
Lung Ultrasound to track lung disease in SJIA LD Patients - Patricia Vega
zhlédnutí 126Před 2 lety
Lung Ultrasound to track lung disease in SJIA LD Patients - Patricia Vega
The Role of External Controls in FDA Decision Making - Veronica Miller
zhlédnutí 37Před 2 lety
The Role of External Controls in FDA Decision Making - Veronica Miller
Retrospective Natural History Study in SJIA & MAS
zhlédnutí 42Před 2 lety
Contents: 00:00 - Natural History Studies as a source of external controls in refractory SJIA trials: Fabrizio DeBenedetti 3:33 - Discussion Invited Comments from FDA (Kerry Jo Lee, Nikolay Nikolov) 18:00 - Proposal for retrospective chart review as an external control group: Alexei Grom & Fabrizio DeBenedetti 22:50 - Discussion Invited Comments from FDA (Kerry Jo Lee, Nikolay Nikolov)
How to include refractory SJIA w/out arthritis in Clinical Trials?
zhlédnutí 69Před 2 lety
Contents: 0:00 - Patient Perspective on Refractory SJIA w/out Arthritis Patient Panel: Zulayka Martinez, Anna Carlson, Cappy Culicchia, Leah Bush 15:12 - Proposals for including Refractory SJIA w/out Arthritis in Clinical trials Moderator: Hermine Brunner Proposals for including this patient group: Fabrizio DeBenedetti 23:15 - Panel Discussion Invited Comments from FDA (Nikolay Nikolov)
How to overcome barriers to MAS Clinical Trials?
zhlédnutí 84Před 2 lety
Contents: 00:00 - Patient Perspective on MAS & Clinical Trials: Patient Panel - Regina Minerva, Sarah Tronsdal, Robyn Rivera 23:03 - Barriers to MAS Trials: Alexei Grom & Fabrizio DeBenedetti 35:00 - Panel Discussion Invited Comments from FDA (Nikolay Nikolov)
It is Time for IL18 Driven Clinical Trials
zhlédnutí 239Před 2 lety
Contents: Panel moderated by Dan Lovell: 0:00 - Fabrizio De Benedetti & Scott Canna : It is time for IL-18 driven clinical trials in autoinflammatory disease 23:00 - Ed Behrens: Case study of patient with IL18 inhibitor usage in SJIA-LD 36:50 - Chris Leptak: Regulatory Perspective about Biomarkers in Drug Development
Real World Evidence for Rare Disease Clinical Trials - Isaac Kohane
zhlédnutí 67Před 2 lety
Real World Evidence for Rare Disease Clinical Trials - Isaac Kohane
The Elephant in the Room SJIA Diagnostic/Classification Criteria
zhlédnutí 67Před 2 lety
Contents: 0:00 - Panel moderated by Peter Nigrovic Panelists: Yuki Kimura, Bas Vastert, Fabrizio De Benedetti & Dan Lovell 24:00 - Discussion Invited Comments from FDA (Nikolay Nikolov)
Unmet Needs and Patients Stories
zhlédnutí 100Před 2 lety
Contents: 0:00 - Welcome & Unmet Needs in Refractory SJIA & MAS - SJIA Foundation Perspective: Rashmi Sinha 11:50 - Patient Stories Patients: Kari Cupp, Laura Bogg, Robyn Rivera, Ronny Bachrach
Working Session - SJIA Diagnostic Criteria and IL18 Trials
zhlédnutí 64Před 2 lety
Working Session - SJIA Diagnostic Criteria and IL18 Trials
Distinct Clinical Phenotypes in Refractory SJIA & MAS - Alexei Grom
zhlédnutí 123Před 2 lety
Distinct Clinical Phenotypes in Refractory SJIA & MAS - Alexei Grom
The Many Faces of Refractory SJIA - Parent Panel
zhlédnutí 109Před 2 lety
The Many Faces of Refractory SJIA - Parent Panel
MAS: Old and New Treatments - Scott Canna
zhlédnutí 89Před 2 lety
MAS: Old and New Treatments - Scott Canna
What is Stills Disease and Strategies for Treatment - Petros Efthimiou
zhlédnutí 333Před 2 lety
What is Stills Disease and Strategies for Treatment - Petros Efthimiou
What is SJIA and Strategies for Treatment: Alexei Grom
zhlédnutí 219Před 2 lety
What is SJIA and Strategies for Treatment: Alexei Grom
Some Interesting SJIA-LD Cases from around the world
zhlédnutí 28Před 2 lety
Some Interesting SJIA-LD Cases from around the world
SJIA-LD Research Updates: Grant Schulert
zhlédnutí 16Před 2 lety
SJIA-LD Research Updates: Grant Schulert
SJIA LD Research Update - Adriana Almeida De Jesus
zhlédnutí 30Před 2 lety
SJIA LD Research Update - Adriana Almeida De Jesus
Bridging the Gap Between SJIA and Still's
zhlédnutí 32Před 2 lety
Bridging the Gap Between SJIA and Still's