UC Davis Health Clinical Studies

A Registry Study Called the International Pleuropulmonary Blastoma Registry for PPB, DICER1, and Associated Conditions

This Registry Study is for individuals that have a condition which may be associated with a gene called DICER1.

You have been asked to participate in this Registry study. You or a family member have a condition which may be associated with a gene called DICER1 or have been found to have a change in the DICER1 gene. Many individuals with a change in the DICER1 gene are healthy. Some children and adults may develop tumors or other conditions. This study seeks to understand more about the function of the DICER1 gene. We want to know the clinical course of conditions associated with it. This includes PPB, cystic nephroma of the kidney, Wilms tumor, sarcoma, ovarian tumors, thyroid nodules and thyroid cancer, pineoblastoma, pituitary blastoma and others.

Registry Study
Any, age -1 years or older

The Patient-Reported Outcomes Project of HCV-TARGET

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This study is called “PROP UP.” The research team includes patients affected by Hep C, a Hep C patient advocacy organization, and researchers. Over 1920 patients with Hep C will be invited to participate. Patients will be recruited from 9 liver centers across the U.S. and will be asked to complete surveys before, during and after Hep C treatment. With the information collected on these surveys, the researchers can better answer the following questions: (a) What types of symptoms do patients with Hep C experience? (b) Do these symptoms go away or lessen if cured from Hep C? (c) What type of side effects do patients experience on different treatments or do patients feel better on treatment? (d) Does patient functioning and well-being change during and after treatment? (e) What are the longer-term benefits and harms of treatment? (f) Are there differences in how well patients take their pills on different treatments? (h) Do different kinds of patients report different experiences during and after treatment? You are being invited to be in the study because you have Hepatitis C and your liver provider plans to prescribe you treatment for Hepatitis C soon.

Patient Registry
Any, age 21 years or older

EVERYCHILD PROTOCOL

A REGISTRY, ELIGIBILITY SCREENING, BIOLOGY AND OUTCOME STUDY

The goal of this clinical protocol are: 1. To maintain a Childhood Cancer Registry for infants, children, adolescents, and young adults with cancer. 2. To use gathered clinical and biological data to help find therapeutic clinical trials. 3. To develop a childhood cancer biorepository for current and future research. The scientists will collect biospecimens including blood and tissue samples 4. To be able to contact the participants to consider participating in non-therapeutic and prevention research studies With only 75% of all children diagnosed with cancer in the US being ultimately cured of their disease, cancer remains the leading cause of death from disease in the US. Even those children whose cancers are successfully treated suffer numerous short- and long-term toxicities after receiving current state-of-the art treatment. Further advances in the treatment of childhood cancer will depend on the refinement or development of new ways to characterize tumors and use this knowledge for development of novel medicines. outcomes.

Other study
Any, age -1 to 25 years old

Long-Term Follow-Up of Patients Who Have Participated in Children's Oncology Group Studies

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This study is organized by Children’s Oncology Group (COG). COG is an international research group that conducts clinical trials for children with cancer. More than 200 hospitals in North America, Australia, New Zealand, and Europe are members of COG. Incredible progress has been made in treating childhood cancer. With all this success has come a need to monitor patients’ health status and quality of life years after their treatment is finished. Following the progress of patients over many years (called long-term follow-up) is needed to identify problems that patients treated for childhood cancer may face. However, treatment centers often lose contact with many of their patients after they finish treatment. The longer the time since treatment has finished, the less likely the patient’s treatment center will have the patient’s current contact information. Over time, patients may move, change their names, and receive follow-up care less often or at different locations. Things like this make it difficult for treatment centers to have up to- date contact information for their patients. This clinical trial keeps track of and collects follow-up information from patients who are currently enrolled on or have participated in a Children's Oncology Group study. Developing a way to keep track of patients who have participated in Children's Oncology Group studies may allow doctors learn more about the long-term effects of cancer treatment and help them reduce problems related to treatment and improve patient quality of life.

Procedure study
Any, age -1 years or older

A study following patients with Huntington's Disease over time

Help us learn more about Huntington's Disease

We hope to learn more about Huntington’s Disease (HD) and to try to find new treatments for the disease. This research study will collect clinical information about you and your health. We will also collect biological samples, such as blood and DNA (the genetic material in your blood). People from many countries contribute to Enroll-HD. Because of the size of the study, we hope to get answers to many research questions faster than in the past. You are being asked to take part in this study because you have HD or are from an HD family. You may also be in the study as a “community control”. A community control is a person who does not carry the HD genetic mutation that causes Huntington’s disease and is not part of an HD family.

Prospective
Any, age 18 and older

Enrollment on the Childhood Cancer Research Network (CCRN) of the Children s Oncology Group

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Background: - The Children s Oncology Group has established a research network, the Childhood Cancer Research Network (CCRN), to collect information about children with cancer and other conditions that are benign but involve abnormal cell growth in order to help doctors and scientists better understand childhood cancer. The CCRN's goal is to collect clinical information about every child diagnosed with cancer and similar conditions in the United States and Canada, to allow researchers to study patterns, characteristics, and causes of childhood cancer. The information can also help researchers study the causes of childhood cancer. To expand the CCRN, parents of children who have been diagnosed with cancer will be asked to provide information about themselves and their child for research purposes. Objectives: - To obtain informed consent from parents (and the child, when appropriate) of infants, children, adolescents, and young adults newly diagnosed with cancer to enter their names and certain information concerning their child into the Childhood Cancer Research Network. - To obtain informed consent from parents (and the child, when appropriate) of infants, children, adolescents, and young adults newly diagnosed with cancer for permission to be contacted in the future to consider participating in non-therapeutic and prevention research studies involving the parents and/or the child.

Any, age 0 to 18 years old

A Registry Study for Pediatric Patients With Antiphospholipid Syndrome (the immune system wrongly attacks normal blood proteins)

This research study will take a look at Antiphospholipid Syndrome in order to learn how to better diagnose and control it.

This is a research study. Research studies only include people who choose to take part. You are being invited to join a research study because you have an auto immune / immunologic disease. You are being asked to take part in this study because you were seen at the Pediatric Nephrology Clinic at UC Davis Medical Center for a condition called Antiphospholid Syndrome. This condition may be caused by different diseases. We hope to learn more about how these diseases and conditions present. We hope to prepare you, your doctor, and others to better diagnose and control it. You will NOT receive any drug as part of this study, other than the ones that your health care provider feels are necessary as part of your routine care.

Any, age 0 to 18 years old
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