How will I know how to classify myself within the ifrregistry?

The first time you log on to the Infertility Family Research Registry you will be asked to define yourself as infertile, fertile, egg or sperm donor, or carrier/surrogate. Questions you are asked will depend on the category you choose. Use the definitions below to help you decide which category to enter.

  • INFERTILE: Women and men who had difficulty conceiving or carrying a pregnancy. Includes those with diagnosis of infertility and those who have not yet seen a fertility specialist. Includes those who never carried a baby to term and those who were ultimately able to do so. Also includes single women, single men and same sex couples who used donor insemination or other fertility treatments to conceive.
  • FERTILE: Women and men who conceived or carried all pregnancies without medical help. Men and women who are just beginning their quest for a child and have no reason to believe they will have fertility problems. Those who have completed their family building and have an interest in serving as a comparison group.
  • EGG OR SPERM DONOR: Anyone who has served as either an egg or sperm donor. Includes those who have conceptions and deliveries of their own, and those who have not. Also may include someone with subsequent fertility problems.
  • CARRIER/SURROGATE: Anyone who has served as either a traditional surrogate (using your own eggs) or a gestational surrogate carrier (using the eggs of either the intended mother or an egg donor). Includes those who have conceptions and deliveries of their own, and those who have not. Also may include someone with subsequent fertility problems.

Volunteer for the ifrregistry

How does the Infertility Family Research Registry work?

  • To be part of the registry, all you need to do is to sign on to our website and fill out our questionnaire. Simply filling out and updating this questionnaire will help us to gain a lot of information about your health and that of your children. We ask that you continue to update your information as it changes over time.
  • Joining the ifrregistry
  • In addition, the registry will allow investigators who are doing studies to find interested individuals who would like to participate in these studies. Studies may include simple surveys, interviews, or you may be asked for permission to access your medical records, or to be part of a study that includes having blood drawn or other medical testing. Each time you are approached for a study you will be asked to read and sign a consent form for that study. This consent form will tell you about the study and about the personnel conducting the study. We will also maintain a list of studies seeking volunteers on our Ongoing Studies page.

What does becoming part of the registry involve?

  • When you press the button that says “Join” you will be asked to read a document called an Informed Consent Form that has been approved by the Institutional Review Board at Dartmouth College, a legally constituted group that has responsibility for the oversight of human subjects research.
  • After you read the Informed Consent Form, if you are comfortable with the information you have read, you will enter your name and press a button indicating that you agree to participate. If you decide not to participate after reading this form, you do not need to do so.
  • You will be asked to create a user name and a password for logging onto the site.
  • When you log on, you will be asked a series of questions about your overall health, your reproductive history (any pregnancies, miscarriages, births, etc), your fertility treatment (if any), and about any children. We will also ask about the health of your children.
  • We would like you to periodically update this information as your fertility treatments continue or your family grows and changes.

Where will the information that I enter be kept and will it be safe?

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The information you provide will be housed in a SECURE data collection system under password protection at Dartmouth Medical School in the offices of the highly experienced BioInformatics Department (see the About Us page of this Website for more information about Dartmouth BioInformatics). Only a very limited number of people will have access to this information and no use will be made of it without your permission other than to ensure compliance with laws regarding consent and to allow us to contact you if your email address changes. Information from volunteers who have agreed to be part of this registry may be presented in summary form but this information will ALWAYS be presented without reference to your name, date of birth, or other identifying information.

What information will I be asked to provide?

The information you will be asked to provide is outlined below. The time it takes to fill out these forms as well as the information itself will vary depending on your fertility history and number of children, if any. Average time to complete the survey should be no more than 15-20 minutes. At the end of each form, you may save information and return and complete your entries later.

Everyone will be asked to provide the following:

  • Email address and name (These are for contact purposes and to confirm that you have indeed given your consent to be part of the registry.)
  • Contact information: we request that you provide an alternate way of reaching you
  • Date of birth

Everyone will get questions on:

  • Demographics
  • General health

If you have a history of being INFERTILE the information we will ask about includes:

  • Reproductive history (for women: pregnancies, miscarriages deliveries, if any)
  • Reason for infertility
  • Fertility treatments, if any
  • Delivery information, if you have had a baby
  • Health of any children

If you are signing in as someone who is FERTILE with no history of infertility the information we will ask about includes:

  • Reproductive history (for women: pregnancies, miscarriages deliveries, if any)
  • Delivery information, if you have had a baby
  • Health of any children

If you are an EGG or SPERM DONOR or a CARRIER/SURROGATE the information we will ask about includes:

  • Number of times you participated in donations or surrogacy cycles
  • Whether your participation was for a known recipient or was for someone you didn’t know
  • Health problems that arose after your involvement
  • Your overall satisfaction with being part of this process

For your protection, information we are NOT asking for includes:

  • We will not ask for Social Security Number
  • We will not ask for Credit Card information
  • We will not ask for your Income or other Financial Information

Remember: At any time you can elect to omit questions that you would prefer not to answer.