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Biobank for Potential or Known Genetic Diseases

This study is for patients of all ages with either known or suspected genetic diseases. There is no cost associated with participation in this research study. We would like to obtain a…

Investigator
Estrella Lizbeth Mellin Sanche, Pamela Trapane
IRB Number
IRB202002626
Ages
0 Years – 100 Years
Sexes
All
Location
Jacksonville

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Rare Disease Registry

This is a registry (data bank) for patients of all ages with Gaucher, Fabry, Pompe, or MPS1 disease. The sponsors of this registry are Genzyme Corporation (Genzyme) (United States) and Sanofi…

Investigator
Pamela Trapane
IRB Number
IRB202101353
Ages
0 Years – 100 Years
Sexes
All
Location
Jacksonville

A Multicenter, Interventional, Retrospective and Prospective study of Enzyme Replacement Therapy (VPRIV) Clinical Outcomes and Safety in Gaucher Disease Type 1 Patients Previously Treated with Substrate Reduction Therapy

Adult patients with Gaucher Disease Type 1 who have previously received SRT (substrate replacement therapy) and are now receiving ERT (enzyme replacement therapy) with velaglucerase alfa. For group…

Investigator
Estrella Lizbeth Mellin Sanche
IRB Number
WCG20210806
Ages
18 Years – 100 Years
Sexes
All
Location
Jacksonville

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Sildi-Safe: Safety of Sildenafil in Premature Infants with Severe Bronchopulmonary Dysplasia (BPD)

This is a multicenter, randomized, placebo-controlled, sequential dose-escalating, double-masked, safety study of sildenafil in premature infants with severe bronchopulmonary dysplasia (BPD)….

Investigator
Mark Hudak, Josef Cortez, William Driscoll, Ma Ingyinn, James Kirk, Padma Nandula, Sfurti Nath, Sanket Shah, Renu Sharma, Winston Sheen, Shalinkumar Patel, Orlyn Claire Lavilla, John Logan, Grace Twitty, Dawn McDaniel
IRB Number
CED000000503
Sexes
All
Location
Jacksonville

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STOMP study

Phase 3, randomized, placebo-controlled, double-blind trial of tecovirimat for the treatment of human monkeypox virus (HMPXV) disease (Arm A and B). The study will also include a cohort of people…

Investigator
Mobeen Rathore
IRB Number
CED000000716
Ages
7 Years – 60 Years
Sexes
All
Location
Jacksonville

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BabyCOVE study

This is a Phase 2, two-part, open-label in Part 1 and observer-blind, randomized, placebo controlled in Part 2 study to evaluate the safety, tolerability, reactogenicity, and effectiveness of…

Investigator
Mobeen Rathore
IRB Number
CED000000720
Ages
3 Years – 6 Years
Sexes
All
Location
Jacksonville

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The Connection study (20191002)

A randomized, double blind, parallel-group, placebo controlled study to evaluate the efficacy and safety of IBP-9414 in premature infants 500-1500g birth weight in the prevention of necrotizing…

Investigator
Josef Cortez, William Driscoll, Mark Hudak, Ma Ingyinn, Orlyn Claire Lavilla, John Logan, Dawn McDaniel, Padma Nandula, Sfurti Nath, Shalinkumar Patel, Sanket Shah, Renu Sharma, Winston Sheen
IRB Number
1262352
Sexes
All
Location
Jacksonville

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Safety of Sildenafil in Premature Infants at Risk of Bronchopulmonary Dysplasia (20180529)

You are being asked to consider permitting your baby to take part in this research study, because your baby was born prematurely and is at risk for developing a lung disease called bronchopulmonary…

Investigator
Mark Hudak, William Driscoll, Ma Ingyinn, James Kirk, Padma Nandula, Sfurti Nath, Sanket Shah, Renu Sharma, Winston Sheen, Josef Cortez, Shalinkumar Patel, Orlyn Claire Lavilla, John Logan, Grace Twitty, Dawn McDaniel
IRB Number
1304032
Sexes
All
Location
Jacksonville

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Pharmacokinetics, Pharmacodynamics, and Safety Profile of Understudied Drugs Administered to Children per Standard of Care / (POPS) (20193297)

This study is interested in learning more about how drugs, that are given to children by their health care providers, act in the bodies of children and young adults in hopes to find the most safe and…

Investigator
Mobeen Rathore
IRB Number
1283493
Ages
0 Years – 20 Years
Sexes
All
Location
Jacksonville

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Central Nervous System Derived Exosomes: A Novel Source of Biomarkers for Neonatal Hypoxic Ischemic Encephalopathy

The purpose of this research study is to look at biomarkers that come from the baby’s blood and see if these biomarkers are associated with brain injury or if they can predict brain…

Investigator
Mark Hudak
IRB Number
IRB202102111
Ages
0 Years – 1 Years
Sexes
All
Location
Jacksonville

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Open-Label, Phase 2, Multiple Dose Study to Evaluate the Pharmacodynamic Effects, Safety, and Tolerability of Patiromer in Children under 12 Years of Age with Hyperkalaemia

A  Study to Evaluate the Pharmacodynamic Effects, Safety, and Tolerability of Patiromer in Children under 12 Years of Age with Hyperkalaemia. Clinical data shown the benefits of patiromer in…

Investigator
Mohammad Ilyas
IRB Number
20226442
Ages
0 Years – 12 Years
Sexes
All
Location
Jacksonville

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A Global Prospective Observational Registry of Patients with Pompe Disease

This is an international Registry that would like to collect and evaluate outcomes on patients with Pompe. The Sponsor of the study will look at long-term safety of treatments, effectiveness of…

Investigator
Pamela Trapane
IRB Number
POM-005
Ages
0 Years – 100 Years
Sexes
All
Location
Jacksonville