Research Studies and Clinical Trials Search
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Hypophosphatasia (HPP) Registry: A tool used to collect information about HPP
This study aims to enroll patients from the ages of 1 month to 99 years old with a clinical diagnosis of Hypophosphatasia (HPP). Hypophosphatasia is a rare, serious, and possibly fatal genetic disorder. The purpose of this research study is to collect information on patients...
This study aims to enroll patients from the ages of 1 month to 99 years old with a clinical diagnosis of Hypophosphatasia (HPP). Hypophosphatasia is a rare, serious, and possibly fatal genetic disorder. The purpose of this research study is to collect information on patients who have HPP. HPP is a rare disease so there is not a lot of information known about the condition or how it changes as you get older. By collecting information from HPP patients we hope to be able to help other patients in the future.
Hypophosphatasia (HPP): A study of how the body reacts to asfotase alfa treatment over time
This study collects observational Standard of Care (SOC) data in patients currently receiving asfotase alfa for Hypophosphatasia or about to start treatment with asfotase alfa as determined by their doctor. Some blood samples deemed appropriate by the participant's doctor will be...
This study collects observational Standard of Care (SOC) data in patients currently receiving asfotase alfa for Hypophosphatasia or about to start treatment with asfotase alfa as determined by their doctor. Some blood samples deemed appropriate by the participant's doctor will be drawn at their regular clinic visits alongside any blood draws the participant may already have. This additional blood will be used for research purposes in the context of this observational study. The purpose of this research study is to do the following: - Collect information on patients who have HPP - Examine the body's immune response to the medication the participant takes for their disease - Examine how the participant's body reacts to their medication for HPP over time.
Neonatal Diseases: A study on genetic risk factors
More and more often, doctors and researchers are understanding that there may be a genetic reason why some infants have a greater risk of becoming sick from certain diseases. Some of these diseases are directly or indirectly caused by germs, including bacteria, viruses or fungi...
More and more often, doctors and researchers are understanding that there may be a genetic reason why some infants have a greater risk of becoming sick from certain diseases. Some of these diseases are directly or indirectly caused by germs, including bacteria, viruses or fungi. If we can identify the genetic links that make some infants more likely to become sick from these germs, we may be able to target treatment to these higher-risk babies in the future, which could prevent severe illness and even death. The study team is looking for genetic differences that might make certain babies more likely to become sick from Necrotizing Enterocolitis (NEC), Bronchopulmonary Dysplasia (BPD) and specific blood infections (Group B Strep and Herpes Simplex) during the birth to 12-month-old period.
Perinatal Research Biorepository (PRB) Registry: A tool used to collect biological samples during pregnancy for future research
The goal of the Biorepository is to collect, store, and dispense de-identified biological samples with health information to only approved researchers within the hospital network. Any families who are over the age of 18, English-speaking, and have a planned delivery at Children's...
The goal of the Biorepository is to collect, store, and dispense de-identified biological samples with health information to only approved researchers within the hospital network. Any families who are over the age of 18, English-speaking, and have a planned delivery at Children's Mercy and collaborating institutions (University of Kansas Medical Center and AdventHealth Shawnee Mission) can donate remaining biological samples from scheduled clinical procedures at any time of pregnancy.
Rare/Unknown Genetic Diseases: A study of genetics in children to understand unknown or rare conditions and find treatments
Thousands of genetic diseases affecting children remain undiscovered and untreatable. Children's Mercy is in the unique position of having the technology, scientists, physicians, as well as patient volume and diversity to address this challenge...
Thousands of genetic diseases affecting children remain undiscovered and untreatable. Children's Mercy is in the unique position of having the technology, scientists, physicians, as well as patient volume and diversity to address this challenge. Studying the genetics of thousands of children will help us make rapid progress against these unknown diseases and lead the way for future children and families in need. Genomic Answers for Kids is a rich resource for researchers studying genetic conditions, leading to answers and new treatments for children. Our progress on Genomic Answers for Kids relies on clinicians to identify possible participants in the program and for patients to volunteer to take part. Although all of today's participants may not directly benefit, they will help future children and families in need. With each participant's help, we will find genomic answers for kids. We are seeking children who may have a genetic condition or a genetic component to their symptoms, as well as their families.