Notice of Availability of Specimens and Data for Hemochromatosis and Iron-Related Research

Notice Number: NOT-HL-13-189

Key Dates
Release Date: August 9, 2013

Issued by
National Heart, Lung, and Blood Institute (NHLBI)


NHLBI announces the availability of specimens and data collected from the Hematochromatosis and Iron Overload Screening (HEIRS) Study.  HEIRS was initiated to evaluate the prevalence and genetic environmental determinants and potential clinical, personal, and societal impact of iron overload and hereditary hemochromatosis in a multi-center, multiethnic, primary care-based sample of adults.

The initial screen included 102,000 adults recruited from 2001-2002 from primary care practices and blood-drawing laboratories in five North American Field Centers (approx. 51% white, 24% African American, 11% Asian, 11% Hispanic, and 3% unidentified race; 63% female and 37% male).  Blood specimens were tested for transferrin saturation (TS), serum ferritin (SF), and HFE C282Y and H63D genetic variants.  Participants with elevated iron levels and/or C282Y homozygosity, their family members, and frequency-matched control participants completed an examination that obtained data on personal and family medical history, lifestyle characteristics, genetic counseling and assessment of ethical, legal and social implications of screening, as well as clinical and biochemical measures.

These specimens and data are de-identified and are available to qualified investigators for research on hereditary hemochromatosis of iron-related studies; a subset is available for general research.

A full description of the HEIRS Study and instructions on how to apply for specimens and/or data online are available on the NHLBI Biologic Specimen and Data Repositories Information Coordinating Center (BioLINCC) website.  Specimens are released to qualified investigators with funding to perform the research.  There is no cost to the investigator other than the cost of shipping the specimens to the research laboratory.  Funds to perform research using these specimens may be obtained from federal or non-federal sources.  Examples of NIH funding opportunities include NIH Research Project Grant Program (R01), NHLBI SBIR/STTR Funding Opportunities, and NHLBI Secondary Dataset Analyses (R21).


Please direct all inquiries to:

Elizabeth Wagner
National Heart, Lung, and Blood Institute
Telephone: 301-435-0065