Collects body cell samples from people with neurological diseases for research
Collects skin or blood samples from people with ALS, Alzheimer disease, or Batten disease.
Plain-language title generated from the registry record
Registry title: NYSCF Scientific Discovery Biobank
Key facts
- Where
- New York, United StatesSee the site
Where in United States
- New York Stem Cell Foundation Research InstituteNew York, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- New York Stem Cell Foundation Research Institute
- Trial code
- NCT06203106
- Record updated
- 3 March 2025
- Original description
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.Read full original descriptionShow less
NYSCF Scientific Discovery Biobank
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.
Inclusion: 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: 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; Wards of the state.