Trial Information

Confirmation of Self-Reported Incident ALS Cases in the AARP-Diet and Health (AARP-DH) Cohort

Amyotrophic Lateral Sclerosis (ALS) is a rare but rapidly progressive neurological disease
that often results in death within a few years after the diagnosis. The incidence of ALS in
the US is approximately 2.0/100,000/year and is age dependent. Very few epidemiological
studies have investigated the causes of ALS. Last year, Dr. Alberto Ascherio at Harvard
School of Public Health successfully obtained a RO1 grant to investigate the risk of ALS by
documenting ALS cases in five well-established large prospective cohorts: The Nurses'
Health Study (NHS), the Health Professionals Follow-up Study (HPFS), the Cancer Prevention
Study II Nutrition Cohort (CPS IIN), the Multiethnic Cohort (MEC), and the NIH-American
Association of Retired Persons Diet and Health Study (AARP-DH). The primary aims of this
grant are to prospectively clarify the associations between diet and smoking and risk of ALS
in this to date the largest epidemiological study on ALS. Incident ALS cases will be
documented via biennial questionnaires in the first three cohorts. While mortality data
will be obtained in the MEC and AARP-DH cohorts by searching the National Death Index (NDI)
Plus, it is also desirable to identify surviving incident cases in these two cohorts.

The objective of this specific proposal is to ascertain the self-reported incident ALS cases
from the AARP-DH study and obtain consent for medical release following the procedures set
up for Parkinson's disease (PD) cases in the currently approved Parkinson's Genes and
Environment (PAGE) Study IRB approval #06-E-N093. The confirmed ALS cases may be analyzed
as part of the RO1 project. We expect to identify 300 self-reported ALS cases from the AARP
cohort. Detailed analytic plans will be coordinated with Dr. Ascherio.