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| Name | Class |
|---|---|
| Columbia University | OTHER |
| Mayo Clinic | OTHER |
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The purpose is to increase the understanding of the characteristics, circumstances, medical histories and pathologies of children from ages 11 months through 18 years who have died suddenly and unexpectedly, and in some instances, without explanation. The SUDC Registry and Research Collaborative will analyze cases of sudden unexpected deaths in these children to understand risk factors and causes, and develop preventative measures.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Retrospective SUDC cases | All child biospecimens (including mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples or organs retained at autopsy) will be transferred to NYU Biorepository |
| |
| Prospective SUDC cases | Heart and brain tissue will undergo full cardiac pathology consultation or neuropathology consultation will be transferred to pathologists at NYU or Mayo (based on pathologist availability). The PHI will remain intact in these cases since they will need to know how to identify the deceased with the medical records they receive and to complete the entire investigation thoroughly. A full consultation report will be sent back to Dr. Orrin Devinsky and tissue will be returned to the NYU biorepository upon completion of the cardiac or neuropathology consultation. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Biospecimin Collection | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| Risks factors leading to sudden unexplained death in childhood (SUDC) collected from PHI | 5 Years |
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Inclusion Criteria:
Retrospective SUDC Cases
Prospective SUDC Cases
Family Members Subjects
Exclusion Criteria:
SUDC Subjects
Family Member Subjects Any siblings or second degree family relatives that did not have a history or current heart or neurology condition will not be able to enroll in the study.
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1300 participants (400 SUDC subjects and 800 parents, and approximately 100 siblings or symptomatic second degree relatives) over a period of 5 years, including both retrospectively and prospectively ascertained cases.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Laura Gould | Contact | laura.gould@nyulangone.org |
| Name | Affiliation | Role |
|---|---|---|
| Orrin Devinsky, MD | NYU Langone Health | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| New York University School of Medicine | Recruiting | New York | New York | 10016 | United States |
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| ID | Term |
|---|---|
| D053840 | Brugada Syndrome |
| ID | Term |
|---|---|
| D001145 | Arrhythmias, Cardiac |
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D000075224 | Cardiac Conduction System Disease |
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For retrospective SUDC cases: Mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples or organs retained at autopsy.
For prospective SUDC cases: Mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples except heart and brain tissue that will undergo full cardiac pathology consultation or neuropathology consultation will be transferred to pathologists at NYU or Mayo (based on pathologist availability).
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |