Biobank for studying ALS and Alzheimer's diseases

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The New York Stem Cell Foundation (NYSCF) Research Institute is conducting research to advance understanding of various diseases by creating stem cells from biological samples such as skin or blood. This observational study involves collecting health questionnaires, biological samples, and saliva for genetic analysis. The aim is to explore genetic factors and develop potential treatments or cures for conditions like ALS and Alzheimer's disease. Participants may also be contacted for future studies based on their contributions.

Why it matters

Who can join: the full rules

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.

Where it's running

• New York Stem Cell Foundation Research Institute
  New York, New York, United States Recruiting

Study contacts

• Principal investigator: Laura Andres-Martin, PhD — New York Stem Cell Foundation Research Institute
• Study coordinator: Clinical Research Office
• Email: clinicalresearch@nyscf.org
• Phone: 212-927-1801

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.