What is the GAP Registry?
Genotype and Phenotype (GAP) Registry is a unique resource that advances understanding of the function of disease-associated genes. A population resource with over 6,000 healthy participants, the GAP provides blood samples to researchers throughout the US from volunteers who are selected based on the presence or absence of particular genetic variants.
GAP stands for “genotype and phenotype.” “Genotype” is the information contained in your DNA. DNA is the hereditary material you receive from each of your parents and is found in every cell of your body. “Phenotype” refers to all your outward traits such as height and eye color, as well as other characteristics such as creativity, athletic ability or even your tolerance for certain medications.
Why is my genotype and phenotype important?
By studying the genetic differences (genotype) and the set of individual characteristics (phenotype) in many people, scientists will be able to compare and learn more about diseases such as autoimmune diseases and cancer. These advances are enabling us to better define the influence of genetic differences on human health and illness.
Who is eligible to participate in the GAP Registry?
If you are over the age of 18 and generally healthy, you can join the GAP.
How do I join?
Read and complete the GAP Research consent form and questionnaire by clicking here. This electronic process will take you approximately 10 minutes. Upon completion of the consent form and questionnaire, you will receive a list of sites where you can have your blood drawn within six months.
Once you enroll, a research coordinator might ask if you will volunteer in future research studies. You are never obligated to participate in any additional studies; rather, you will be able to receive more information and have a discussion with us so that you can decide if you want to participate.
I am a Northwell Health employee. Will I be compensated for participating in the GAP Registry?
As a Northwell Health employee, you have the opportunity to enroll in the GAP Registry as one of your Wellness Pledges. By completing this action in 2016, you will receive $260 in 2017 paycheck credits, under the condition you complete by October 31, 2016. Since the program runs on a calendar year, you will receive credit if you complete in November/December, but your paycheck credits will be delayed six to eight weeks. For more information about Wellness Pledges, please click here.
If a participant chooses to enroll in a follow up study, she/he will then receive a stipend.
The GAP Registry is approved by the Northwell Institutional Review Board (IRB), which is part of the Human Research Protection Program at Northwell. The Northwell Health wellness program is a voluntary program. A participant can choose many other actions instead of this one. No one will question your decision to do or not do any of wellness actions in our program.
I am a Northwell Health employee and I already registered for GAP. Will I receive my Wellness Pledge?
Any Northwell Health employee who enrolled in the GAP Registry (by completing the consent and questionnaire and providing a blood sample) after September 2015 and is eligible to receive the 2016 Wellness Pledge, will receive the 2017 paycheck credits. Please be sure to include your employee ID in the GAP questionnaire – that employee ID will be shared with Employee Benefits for the Pledge.
If you registered for the GAP before September 2015 and would like to participate in the 2016 Wellness Pledge, or are unsure if you already registered, please contact Gila Klein at 516-562-1175 or GKlein@northwell.com.
I am not a Northwell employee. Will I be compensated for participating?
There is no compensation for the initial enrollment in the GAP Registry. However, if you enroll in the GAP Registry and then participate in a follow-up study, you will receive a stipend.
Will I learn anything about my genetics by joining?
No individual results will be shared because the information learned is preliminary and has limited value for an individual’s medical treatment.
Once I join, 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.
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.
Contact Gila Klein or Margaret Defranco at (516) 562-1175 with any additional questions.