NYSCF Scientific Discovery Biobank

Launched by NEW YORK STEM CELL FOUNDATION RESEARCH INSTITUTE · Jan 2, 2024

Keywords

ClinConnect Summary

The NYSCF Scientific Discovery Biobank is a research study designed to help scientists learn more about various diseases, including ALS, Alzheimer’s disease, and several types of cancer. The goal is to use samples from participants, such as skin or blood, to create stem cells and other cells that can be studied. This research aims to uncover potential treatments or cures for these serious health conditions.

To participate, individuals must be at least 30 days old and have a diagnosis of one of the targeted conditions or be a healthy control. Adults who can make decisions will need to give written consent, while those unable to consent due to their condition will require approval from a legal representative. Participants can expect to provide samples for research and may help contribute to important discoveries in medicine. It’s important to note that certain health conditions may prevent someone from joining, so it's best to discuss eligibility with the research team.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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.
• Exclusion Criteria:
• • 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.