NYSCF Scientific Discovery Biobank
1 other identifier
observational
10,000
1 country
1
Brief Summary
The New York Stem Cell Foundation (NYSCF) Research Institute is performing this research to accelerate diverse disease research using cells from the body (such as skin or blood cells) to make stem cells and other types of cells, conduct research on the samples, perform genetic testing, and store the samples for future use. Through this research, researchers hope to identify future treatments or even cures for the major diseases of our time.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Nov 2022
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
November 10, 2022
CompletedFirst Submitted
Initial submission to the registry
January 2, 2024
CompletedFirst Posted
Study publicly available on registry
January 12, 2024
CompletedPrimary Completion
Last participant's last visit for primary outcome
November 10, 2045
ExpectedStudy Completion
Last participant's last visit for all outcomes
November 10, 2045
March 3, 2025
February 1, 2025
23 years
January 2, 2024
February 27, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Biobank
Establishment of a diverse repository of biological samples, stem cell lines, derivatives, and associated information to support investigations into the biology, etiology, manifestations, progression, risk factors, genetic underpinnings, and treatment of diseases, conditions, and traits.
Baseline
Study Arms (2)
Affected Subjects
Subjects in this group will have a diagnosis and/or medical history of a condition, disease, genetic background, or trait of interest.
Healthy Control
Subjects in this group will serve as healthy controls.
Interventions
Skin biopsy (2-3mm) and/or blood (up to 50 mL); saliva; excess/ leftover biospecimens that were (or will be) collected for other purposes (e.g., medical procedure).
Eligibility Criteria
Individuals with a diagnosis of one or more of the listed conditions. Individuals without a condition to serve as healthy controls (a comparison group for those with conditions).
You may qualify if:
- Age 30 days or older.
- Diagnosis and/or medical history of a condition, disease, genetic background, or trait of interest or healthy control.
- Adults with decisional capacity must provide written informed consent unless physical limitations preclude signing.
- Adults without decisional capacity to consent must a have diagnosis of Amyotrophic Lateral Sclerosis (ALS), Alzheimer's Disease and Related Dementias (AD/ADRD); Batten Disease, Corticobasal Degeneration (CBD), Dementia, Frontotemporal Dementia (FTD), Huntington Disease, Lewy Body Disease, Multiple Sclerosis, Multiple System Atrophy, Parkinson's Disease (PD), Parkinsonism, and/or Progressive Supranuclear Palsy, and must provide assent; a legally authorized representative (LAR) must also provide written informed consent.
- Minors undergoing skin collection for research purposes must have a condition, disease, genetic background, or trait of interest and parental/guardian consent.
- Minors undergoing blood, and/or saliva collection for research purposes may have a condition, disease, genetic background, or trait of interest or serve as a healthy control and must have an available parent/guardian to provide consent.
- Minors transferring biological samples and associated data from a procedure outside of the research may have a condition, disease, genetic background, or trait of interest or serve as a healthy control and must have an available parent/guardian to provide consent.
You may not qualify if:
- Wards of the state.
- For prospective skin samples: history of keloid formation, coagulation disorder, or allergy to the anesthetic.
- For prospective blood samples: history of coagulation disorder.
- For all prospective sample collections: 1) Subjects who refuse to adhere to NYSCF's and/or a collection site's safety protocol(s) will be excluded; 2) Subjects with an AIDS diagnosis and CD4 count of less than 200 cells per microliter (mcL) of blood will be excluded due to increased risk of infection.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
New York Stem Cell Foundation Research Institute
New York, New York, 10019, United States
Biospecimen
Skin biopsy (2-3mm) and/or blood (up to 50 mL); saliva; excess/leftover biospecimens that were (or will be) collected for other purposes (e.g., medical procedure)
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Laura Andres-Martin, PhD
New York Stem Cell Foundation Research Institute
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
January 2, 2024
First Posted
January 12, 2024
Study Start
November 10, 2022
Primary Completion (Estimated)
November 10, 2045
Study Completion (Estimated)
November 10, 2045
Last Updated
March 3, 2025
Record last verified: 2025-02
Data Sharing
- IPD Sharing
- Will not share