Participation

Participation is fast and easy! To join you will have to:

  • 1. read and sign a consent form
  • 2. answer a short health survey
  • 3. provide a DNA sample via blood

Once you sign up, you may be contacted and asked if you will volunteer in future research studies. You are never obligated to participate in any additional studies; rather, you will be able to contact us and receive more information so you can decide about whether or not you want to participate. Participants may be compensated.



Frequently Asked Questions

What kind of studies may I be asked to join? Although we cannot predict every future study, most will involve providing a blood sample or answering some questions. You will not be asked to take any medicine or treatments.

Will I be compensated for participating? Yes, you will be compensated for participating.

How is my privacy protected? We take many steps to protect your privacy and to prevent any misuse of your health or genetic information. This includes removing identifying data (for example your name or date of birth) and assigning numbers or barcodes to your sample and data. The key between a participant’s identifying data and code numbers is kept secure in locked files. In addition we have a Certificate of Confidentiality from the National Institutes of Health, which assures that we cannot be forced to disclose information, even under subpoena.

Will I receive any results? The information learned is preliminary and has limited value for an individual’s medical treatment. Therefore, we will not provide any individual results. General research findings that lead to accurate and reliable tests or treatments will be shared in our newsletters.

Who is eligible to participate? If you are over age 18 years of age and generally healthy, you can join the GAP.



Principal Investigator Peter K. Gregersen, MD

Head, Robert S. Boas Center for Genomics and Human Genetics Feinstein Institute for Medical Research at Northwell Health

Dr. Gregersen, trained as a rheumatologist, has dedicated his entire career to understanding of the genetic basis of autoimmune disease. In the 1980s he cloned the first group of genes related to rheumatoid arthritis (RA). More recently Dr. Gregersen and his colleagues have discovered two genes – PTPN22 and STAT4 – which are providing major clues to what happens in patients with RA and lupus, another autoimmune disease. Over 20 new genes for autoimmune disorders have been identified by Dr. Gregersen and his collaborators in the last several years

The GAP Registry was initially funded by NIH grant RC2AR059092-01 awarded to Feinstein Institute for Medical Research Principal Investigators Peter K. Gregersen, MD and Betty Diamond, MD.

Study Team

Gila Klein, GAP Registry Project Coordinator
Gila has been a research coordinator at the Genomics and Human Genetics department since 2003 and coordinated various studies. She has worked in research for over 17 years.

Mike Ryan Assistant Director, Boas Center Biorepository (BCB)
Michael Ryan has been with the BCB since 2003. In his role, he oversees the handling of large numbers of research specimens, including those collected for the GAP Registry. Mike and his staff utilize cutting edge laboratory robotics and custom database software applications to insure that all samples are of the highest quality and are perfectly suited for investigators needs.

Margaret DeFranco, RN Research Nurse
Margaret has been a registered nurse for 25 years. She worked in medical-surgical nursing and pain management before joining the GAP team.



Why are we interested in the relationship between genotype and phenotype?

This is an exciting and promising time in human genetics and medical research. Since completion of the Human Genome Project in 2003 there have been many amazing advances in our understanding of the genetic basis of medical conditions.

These advances are enabling us to better define the influence of genetic differences on human health and illness. This information will enable scientists to develop innovative approaches to diagnosis and treatment. You can play an important part in this process.

By assembling this group of individuals who have provided basic demographic and health information, along with a DNA sample, scientists are able to identify and recruit the most suitable comparison participants for each research study. This is an extremely valuable resource that will speed up scientific discoveries.



E-mail: ResearchRegistry@nshs.edu