Metformin Fragile X

04/21/2023

Join us on April 27 at 6pm MST to discuss Fragile X Syndrome and a clinical trial of metformin that is currently recruiting! RSVP here: https://docs.google.com/forms/d/e/1FAIpQLScqU1wq0Jngj7uYev8f4APw2YhOBLCz3fxzdFMoyjdpET_frw/viewform?fbclid=IwAR2So5EO9wJNK7c36XwFiZzY57b4rFBIFmeqsI3LcSKErcA2JGk1xEl9hGk

Join us for an informal conversation about the research taking place in Canada to support FX. For any questions please reach out to [email protected]

01/30/2023

We’re recruiting for a clinical trial for individuals with Fragile X Syndrome in Canada! Please join us on February 9 to learn more about the trial!

Who: Dr. Francois Bolduc, Dr. Randi Hagerman, Dr. Sebastien Jacquemont, Dr. Sarah Lippe

When: February 9 at 5pm MST

Where:

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01/23/2023

Join us on January 28 at 2pm MST to discuss Fragile X Syndrome and a clinical trial of metformin that is currently recruiting! RSVP here:

Join us for an informal conversation about the research taking place in Canada to support FX. For any questions please reach out to [email protected]

12/07/2022

Join us on December 8 at 6pm MST/8pm EST to discuss Fragile X Syndrome and a clinical trial of metformin that is currently recruiting!

RSVP here:

Join us for an informal conversation about the research taking place in Canada to support FX. Join Dr. Francois Bolduc, Dr. Randi Hagerman and Karen Kelm for updates on the Metformin trials and a reflection on the Gordon Research Conference this past May. For any questions please reach out to metcoo...

10/31/2022

We’re recruiting for a clinical trial for individuals with Fragile X Syndrome in Canada! Please join us on November 10 to learn more about the trial!

Who: Dr. Francois Bolduc, Dr. Randi Hagerman, Dr. Sebastien Jacquemont, Dr. Sarah Lippe
When: November 10 at 6pm MST
Where: Zoom (link will be provided when you RSVP)
RSVP:

Join us for an informal conversation about the research taking place in Canada to support FX. Join Dr. Francois Bolduc, Dr. Randi Hagerman and Karen Kelm for updates on the Metformin trials and a reflection on the Gordon Research Conference this past May. For any questions please reach out to metcoo...

09/26/2022

We are running an information session to describe the Double-Blind, Placebo-Controlled Trial of Metformin in Individuals with Fragile X Syndrome and answer your questions. Join us on
September 28 at 6pm MST!
RSVP:

Join us for an informal conversation about the research taking place in Canada to support FX. Join Dr. Francois Bolduc, Dr. Randi Hagerman and Karen Kelm for updates on the Metformin trials and a reflection on the Gordon Research Conference this past May. For any questions please reach out to metcoo...

09/19/2022

We’re recruiting for a clinical trial for individuals with Fragile X Syndrome in Canada! Please join us on September 28 to learn more about the trial!

Who: Dr. Francois Bolduc, Dr. Randi Hagerman, Dr. Sebastien Jacquemont, Dr. Sarah Lippe
When: September 28 at 6pm MST
Where: Zoom (link will be provided)
RSVP:

Join us for an informal conversation about the research taking place in Canada to support FX. Join Dr. Francois Bolduc, Dr. Randi Hagerman and Karen Kelm for updates on the Metformin trials and a reflection on the Gordon Research Conference this past May. For any questions please reach out to metcoo...

08/05/2022

FAQ Friday! What age do you need to be to participate?
Anyone aged 6-35 who meet our other inclusion and exclusion criteria can participate.
For more details, see the FAQ page on our website: metforminfxs.com/faq

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

08/03/2022

It’s Wonder Wednesday! Did you know? Some symptoms of Fragile X Syndrome include:
-Intellectual disabilities, ranging from mild to severe.
-Attention deficit and hyperactivity, especially in young children
-Anxiety and unstable mood
-Autistic behaviours, such as hand-flapping and avoiding eye contact
Learn more about FXS here: metforminfxs.com/about-fragile-x

What is Fragile X Syndrome? Intellectual Disability (ID) affects 3% of children. It results in delayed cognition development and has significant effect on functions in daily activities. An...

07/22/2022

FAQ Friday! What is the parent's involvement?
Parents will need to attend all visits, answer questionnaires, and provide information to the study staff. Parent involvement will be key during the visit to assist us in working most effectively with your child.
For more details, see the FAQ page on our website: metforminfxs.com/faq

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

07/20/2022

Hey! It’s Wonder Wednesday! Wondering if someone you know may be eligible to participate in our clinical trial of metformin for individuals with Fragile X Syndrome? Please have a look at our eligibility criteria! http://metforminfxs.com/inclusionexclusion-criteria.html. You can always reach out to our Research Coordinator if you have any questions or would like to participate by emailing [email protected] or calling 780-492-9461.

Inclusion Criteria Subject has Fragile X syndrome with a molecular genetic confirmation of the full FMR1 mutation (>200 CGG repeats) or the other loss of function mutations of the FMR1 gene (SNVs...

07/18/2022

Only 4 spots left for this year!! We are close to reaching our goal of 20 participants in 2022!! Thank you! If you are interested in participating, please contact our Research Coordinator at [email protected] or 780-492-9461 to book your spot now.

06/22/2022

Wonder Wednesday! Did you know? Fragile X Syndrome is diagnosed by direct DNA testing. Ordered by any doctor, this will determine whether there is a mutation in the X chromosome. This testing is generally covered by a healthcare plan, and requires a blood sample. Learn more about FXS here: metforminfxs.com/about-fragile-x

06/20/2022

Dr. Randi Hagerman in the USA and Dr. Francois Bolduc in Edmonton, Alberta are running a clinical trial of metformin in individuals with Fragile X Syndrome. The Edmonton site is still recruiting so join them to learn more about the trial and have your questions answered!

When: June 22, 2022 06:00 PM MST

Where: Zoom

RSVP: https://forms.gle/TXnZvPbUEKbyTVvXA

06/10/2022

FAQ Friday! Can you be on other medications?
Yes, you just cannot have had recent metformin treatment (in the past 4 months) and the use of other medications must be stable for at least 4 weeks prior to the first visit.
For more details, see the FAQ page on our website: metforminfxs.com/faq

06/08/2022

Hey! It’s Wonder Wednesday! Did you know? Fragile X Syndrome (FXS) overlaps with other ID causes in terms of molecular pathway and as such, it is believed that a better understanding of FXS will also help to better understand other causes of ID. Learn more about FXS here: metforminfxs.com/about-fragile-x.

06/03/2022

FAQ Friday! Can an aide help me?
An aide who is not a parent, guardian, or other legally authorized representative can attend appointments. Please discuss this with the Research Coordinator during the initial phone call.
For more details, see the FAQ page on our website: metforminfxs.com/faq

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

06/01/2022

Did you know? It’s Wonder Wednesday! Did you also know that Intellectual Disability (ID) affects 3% of children? It results in delayed cognition development and has significant effect on functions in daily activities. An increasingly large proportion of children with ID are now found to have a genetic cause for their disability. Learn more about FXS here: metforminfxs.com/about-fragile-x.

What is Fragile X Syndrome? Intellectual Disability (ID) affects 3% of children. It results in delayed cognition development and has significant effect on functions in daily activities. An...

05/30/2022

We are currently recruiting for a clinical trial of metformin for individuals with Fragile X Syndrome. Join us at an information session on June 22 to learn more about this trial and how you can participate! You can also contact our Research Coordinator at [email protected] or 780-492-9461 for more information. There are currently only 5 spaces left in the 2022 stage of the trial!

05/27/2022

FAQ Friday! Do I need to be able to read to participate in the study?
The participant and/or participant’s caregiver must be able to understand, read, write and speak English to complete study-related materials.
The participant or participant’s caregiver must also be able to understand and sign a consent form to join the study.
For more details, see the FAQ page on our website: http://metforminfxs.com/faq.html

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

05/25/2022

Thanks for checking out another Wonder Wednesday! Are you interested in the objectives of our clinical trial of metformin for individuals with Fragile X Syndrome? Check them out here: http://metforminfxs.com/about-the-trial.html.

General Information: This project is a randomized, double-blind, placebo-controlled trial of Metformin. The project is a collaborative effort between 2 sites in Canada and 1 in the United States to...

05/20/2022

FAQ Friday! What information do you need to take part in the study?
The Research Coordinator will discuss everything with you on the phone as a first step. She will be asking questions about you and your family in order to determine if you/your child can join this study. For more details, see the FAQ page on our website: http://metforminfxs.com/faq.html

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

05/18/2022

Wonder Wednesday! Are you wondering about the EEG portion of the trial? We have answers here: https://www.youtube.com/watch?v=L4cyrbG5xow. We understand that some people would rather not have their heads and ears touched and that is totally okay! If this task will cause too much anxiety, stress, fear, or discomfort, we will skip it!

This video will show you day 2 of your first visit to the UofA!

05/16/2022

Metformin will be provided in capsule form in this clinical trial of Metformin in Individuals with Fragile X Syndrome. If your child needs assistance with swallowing pills, you can check out some helpful videos here (http://metforminfxs.com/videos.html).

Training Sessions: How to Swallow a Pill (University of Calgary)

05/13/2022

FAQ Friday! Do I have to travel to participate?
You will have to travel to the study site 3 times during the 4 month trial and then 2 more times if you choose to participate in the 2 year open label portion. Travel expenses will be covered/reimbursed.
For more details, see the FAQ page on our website: http://metforminfxs.com/faq.html

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

05/11/2022

Well, it’s Wonder Wednesday! Did you know? Fragile X is inherited: A father who is a carrier will pass it to all of their daughters and none of their sons. Fragile X can be passed silently through the generations before a child is born with the syndrome. Learn more about FXS here: http://metforminfxs.com/about-fragile-x.html.

What is Fragile X Syndrome? Intellectual Disability (ID) affects 3% of children. It results in delayed cognition development and has significant effect on functions in daily activities. An...

05/09/2022

Dr. Francois Bolduc at the University of Alberta is running a clinical trial assessing the safety, tolerability, and benefits of metformin in individuals with Fragile X Syndrome. Please see our website (http://metforminfxs.com/inclusionexclusion-criteria.html) for the inclusion and exclusion criteria!

Inclusion Criteria Subject has Fragile X syndrome with a molecular genetic confirmation of the full FMR1 mutation (>200 CGG repeats) or the other loss of function mutations of the FMR1 gene (SNVs...

05/06/2022

FAQ Friday! Will I receive any payment to take part in the study?

You will not be paid to participate in this study, however all of your expenses will be covered/reimbursed.

For more details, see the FAQ page on our website: http://metforminfxs.com/faq.html

What is a double-blind, randomized, placebo-controlled trial? This means that the participant/family and the study staff do not know which treatment is being given to each participant. This is the...

05/04/2022

Thanks for checking out another Wonder Wednesday!

Did you know? Fragile X is inherited: A mother who carries Fragile X is 50% likely to pass the mutated gene to her children, who will either be carriers or be diagnosed with Fragile X Syndrome.

Learn more about FXS here: http://metforminfxs.com/about-fragile-x.html.

What is Fragile X Syndrome? Intellectual Disability (ID) affects 3% of children. It results in delayed cognition development and has significant effect on functions in daily activities. An...

05/02/2022

We are all booked up with visits this month, but we are still recruiting participants for the future! Please send us a direct message, email us at [email protected] or call our Research Coordinator at 780-492-9461 for more information.