GEM Project

[Crohn2357]

http://www.gemproject.ca/

The GEM Project investigates the ways in which genetic predisposition, environmental influences and microbial interactions combine to determine if a person develops Crohn’s disease. To do this, researchers study healthy relatives – either siblings or children of people living with Crohn’s disease. To-date, the GEM Project has recruited more than 2,800 participants. The aim of the increased funding is to reach 5,000 recruits and the project is actively recruiting eligible participants.

 

[lgpcarter]

It is a fantastic project! My brother and I are both participating (I have Crohn's, he is healthy.) Very low effort required to enroll.

 

[SupportiveMom]

When we went to SickKids a couple of weeks ago before we left someone approached us to join the study. We have been part of it now for over a year but it was great to see them ask! Hope they reach their numbers soon!

 

[Catherine]

Do you know whether they are taking enrolment outside of Canada?

 

[SupportiveMom]

I don't think so. I would send an email asking. No research similar in Australia? I know the US is doing one through 23andme.

 

[Nancye50]

I'd totally do this if they'd take enrollment from US!

 

[Pilgrim]

Thanks for posting. We have sent an inquiry. Would love to help with this if we can.

 

[Lady Organic]

Im aware of this study, yet something bothered me right when I read the requirements for healthy patients. I thought, if i had healthy kids, would I be comfortable with a nurse calling them twice a year for several years and ask them if they have developped CD...? My answer was ''no''. In daily life, kids of parents with IBD must already know they are at higher risk of getting the disease even if the parents dont tell them that information. At some age, we all naturally understand these things. Most parents must prolly hide the disease as much as they can not to create fear or sadness in the mind of the kid. Well thats what I would do and I already do that with my own parents and I dont feel they need all the details about my disease because it simply affects them too much. If authority figures, such as nurses or doctors from a CD research repeatedly reach healthy kids and ask them if the disease is present or if they are healthy, it can be analyzed for some as almost ''expecting'' the disease to come or being slowly or unconsciously enrolled themselves in the medical environnement. some individuals are more sensitive or anxious than others and for some healthy patients the risk of inducing some disease ideas and creating fears seems not ok for me. I think that this risk has been overlooked in this research. If the researcher would question the CD patient about his siblings or kids that would be fine with me. But repeatedly asking the healthy patient is not quite right in my books.

 

[SupportiveMom]

As a parent having both of my children in the study (one with CD, the other not) I have no issues receiving a call 2x a year asking about overall health and if there has been a diagnosis. My kid without CD (I'll call her S for ease) was happy to enroll and have her blood drawn foe the study. She can't make her sister better but if sharing her health info for 10 minutes a year helps them understand the disease better she is willing to share the information and her time.

The GEM project and I would guess similar studies need 'healthy' patients to understand the genetic component to rule out or better understand environmental components. S doesn't expect the disease to come any more than heart disease because her great grandfather died of it or breast cancer because her grandmother died of it. Understanding family health history and being open about it might be the only way we can better understand all of the factors of the disease. If it gets us closer to a cure, all of my family would participate much more than the small amount this study asks for.

 

[Catherine]

Text reply I received from the GEM project.

Catherine,

Thank you very much for your interest in joining the GEM Project. Unfortunately, we do not have any research centers in Australia at the moment. We currently have research centers in the U.K., Canada, the U.S., and Israel. Please let me know if any of these locations are convenient for you.

There is a possibility that we will be opening research centers in Australia and New Zealand in the near future. Please let me know if you are fine with us contacting you as soon as they are set up.

Thanks,

 

[Clash]

Seems like CIC has her kids in a study like this. Great idea!

 

[my little penguin]

Thing to realize also excludes kids with any Ibs dx or symptoms.
Most Ibd kids have families full of Ibs.

 

[Nancye50]

Oh wow, so maybe there are opportunities in US? I only have ibd worries for one out of my three kids.

 

[SupportiveMom]

No US component to the study. 23andMe is doing a study in the US. Don't think it is as comprehensive as this one though.

 

[Nancye50]

Ah ok thanks!

 

[Catherine]

Nancye50, I would make an enquiry on GEM Project website. As their email to me says there are research centres in the US.