MSRGN Consumer Red Flags Survey

This survey is being initiated by the Mountain States Regional Genetics Network's Genetic Ambassador Program. The goal of the survey is to capture the experience of families and parents with the early signs and symptoms (Red Flags) their children may have experienced on their journey before obtaining a genetic diagnosis. This information will be utilized to create educational materials for other families and providers.

This survey is designed with one individual in-mind. If you have multiple children or family members affected by genetic conditions, we ask that you fill out one full survey response per child or individual.

1.By responding to this survey, you agree that MSRGN can use your responses anonymously for preparing resources to help other families access genetics care in our region.(Required.)

Yes

2.During the journey for yourself or a loved-one, what were the top 5 RED FLAGS (indicators, symptoms, warning signs, and/or medical or developmental concerns) that you or a loved-one experienced and initially led you to seek care or speak to a medical provider?

3.Which of the 5 red flags in Q2 was most concerning for you as a parent?

4.Which of the 5 red flags in question Q2 most concerning for your practitioner? OR, indicate if your practitioner was not concerned.

5.At what age was the first time you or a loved-one experienced the red flags you described in Q2?

Infancy (Prenatal, Newborn, up to 11 months of age)

Early Childhood (12 months to 4 years old)

Middle Childhood (5 to 10 years old)

Adolescence (11 to 21 years old)

Adult (22 years and older)

6.How long ago did this occur? Please indicate in either months and/or years.

7.In which state did your experience(s) occur?

8.If you have received a diagnosis, what was the ultimate genetic diagnosis that you or a loved-one received?

9.If you have received a diagnosis for a genetic condition, was your child ever misdiagnosed prior to that? If so, with what?

Yes (Please Specify)

10.If you have not received a diagnosis, which stage are you at in obtaining one?

Still Testing

Undiagnosed

My child or loved one passed away due to their rare disease

Other

11.How long did it take to receive the diagnosis from first symptoms (Q2) to diagnosis? Please indicate in months and/or years.

13.Did you need to travel to a children’s hospital or university for your diagnosis to be made?

Yes

Other (please specify)

14.What is your home zipcode?

15.OPTIONAL: If you would like to be contacted, to share more details and possibly participate in provider and family-centered education, please share your name and contact info below.

Name

Address

Address 2

City/Town

State/Province

ZIP/Postal Code

Country

Email Address

Phone Number

If you would like to learn more about the Mountain States Regional Genetics Network, please just check out website and our get involved webpage.

Thank you!

Current Progress,

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