Move OI Research Forward – Participate in OI Studies

Move OI Research Forward – Participate in OI Studies

A clinical study is research that involves human volunteers and seeks to answer questions that will add to our knowledge about a medical condition or how to treat it. Learn more about types of studies, how they are organized, and what to consider before participating by reviewing the OIF’s What You Need To Know About Clinical Trials factsheet.

All current OI Studies are listed on the OIF’s Current Studies webpage at www.oif.org/currentstudies.


The OI Foundation would like to bring your attention to current OI research studies:

ORBIT Study

The Ultragenyx ORBIT study is investigating a new treatment in pediatric and young adults with OI Types I, III, or IV. You can find more information on the study flyer here.

If you are interested in learning more about this trial or would like to see if you are able to participate, please reach out to Erin at trialrecruitment@ultragenyx.com


 

OI Wellbeing Study

OI Community Members Ages 13-17: Participate in the OI Wellbeing Study!
In partnership with the OIF, researchers at Baylor College of Medicine are conducting a study to better understand the mental health and pain experiences of the OI community. You will have the opportunity to share your individual experiences and discuss what you think could be improved for people living with OI. Your feedback will inform future research in this area.

Taking part in the study includes participating in an approximately one-hour online interview and the completion of a questionnaire, for which you will be compensated $50. This study is for US residents only. If you or your child are interested in participating in the study, please contact the study team at OIWellbeing@bcm.edu for more information.


Use of clear aligners for the treatment of dental malocclusion in individuals with Osteogenesis Imperfecta Types III and IV

The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position.

For more information, or to see if you are eligible to participate, please contact: Dianne Nguyen, BBDC Project Manager at (713)798-6694 or diannen@bcm.edu


Longitudinal Study of Osteogenesis Imperfecta

The Brittle Bone Disorders Consortium is currently recruiting for a Longitudinal Study of Osteogenesis Imperfecta. The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). We will collect information including medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density.

The overall goal is to improve the health and quality of life of people with OI. Click here to learn more about this study.


Join the OI Registry! The easiest way to learn more about current and upcoming clinical studies is to enroll in the OI Registry. Once you enter your information into this registry, the OIF or researchers will have access to your deidentified information and may ask you to participate in OI surveys or studies. Click here to join now.

 

COVID-19 Survey

The OI Foundation has created a third COVID-19 Survey focused on how the Omicron variant and the pandemic are impacting the OI community. All individuals with OI are encouraged to complete the survey. Responses are anonymous and will help guide future OIF programs.

Please take a few minutes to complete the survey at https://www.surveymonkey.com/r/DXZDHMJ

The survey will be open until March 1, 2022.

OIF National Conference 2022 Update

The 2022 OIF National Conference will be held virtually during the weekend of July 9, 2022.

Although we are disappointed not to be able to meet in person again this year, the safety of the OI community is our top priority. This decision was made in consideration of the feedback we received from the OI Foundation Board of Directors, Medical Advisory Council, and OI community members.

The OI Foundation hopes to host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller, more targeted regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The regional conferences will begin this summer and the full schedule will be posted as details become available.

We thank you for your understanding and patience as we navigate these unusual times. We’ll release more details in the coming months, but please don’t hesitate to reach out if you have any questions. The OI Foundation can be reached by phone at (844) 889-7579 or by email at bonelink@oif.org.

Shop Now! The Seasonal Bone China Tea Shop is Open!

 

Shop the NEW Seasonal Bone China Tea Shop!

In honor of National Hot Tea Month and the 30th anniversary of the OIF’s Bone China Tea fundraising campaign, the OI Foundation has partnered with Driven Coffee Roasters to offer the OI Community delicious loose-leaf tea, coffee blends, honey sticks, and snacks. Be sure to check out the online shop today!

From January 9-23, 30% of sales from the OIF’s Bone China Tea shop will go towards supporting the work of the OI Foundation. Whether you are looking to stock up before National Bone China Tea Day (May 1, 2022) or need to restock your tea and coffee supply, there is something for everyone!

Click Here to Shop Now!

 


Limited Edition 30th Anniversary Bone China Tea Mug – Available on the OIF’s Bonefire Store

What goes best with your new tea purchased from Driven Coffee Roasters? A new OIF mug, of course! Shop the limited-edition Bone China Tea mug on the OIF’s bonfire store today to show your support and enjoy your tea in style. Click here to order your mug!

TWO DAYS LEFT to enter the 2021-2022 OIF Good Stuff Sweepstakes!

TWO DAYS LEFT to enter The 2021-2022 OI Foundation Good Stuff Sweepstakes! ? By entering the Good Stuff Sweepstakes, you are helping the OI Foundation produce new information resources, fund research, provide answers to more than 11,000 requests for information per year, and facilitate support groups across the country. Thank you for your support and GOOD LUCK!

Click Here to Enter!

Click Here to Enter!

COVID-19: Updated Recommendations from the CDC 

Updated Recommendations from the CDC 

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, and it is our goal to provide community members with the most up-to-date medically verified information.  

The CDC released the media statement CDC Recommends Pfizer Booster at 5 Months, Additional Primary Dose for Certain Immunocompromised Children on Tuesday, January 4th, 2022 which notes the following: 

The information below is from the Centers for Disease Control and Prevention. 

Today, CDC is updating our recommendation for when many people can receive a booster shot, shortening the interval from 6 months to 5 months for people who received the Pfizer-BioNTech COVID-19 Vaccine.  This means that people can now receive an mRNA booster shot 5 months after completing their Pfizer-BioNTech primary series.  The booster interval recommendation for people who received the J&J vaccine (2 months) or the Moderna vaccine (6 months), has not changed. 

We encourage you to read the press release in its entirety at: CDC Recommends Pfizer Booster at 5 Months, Additional Primary Dose for Certain Immunocompromised Children 

On Monday, December 27th, 2021 the CDC released the media statement CDC Updates and Shortens Recommended Isolation and Quarantine Period for General Population which stated the following: 

Given what we currently know about COVID-19 and the Omicron variant, CDC is shortening the recommended time for isolation for the public. People with COVID-19 should isolate for 5 days and if they are asymptomatic or their symptoms are resolving (without fever for 24 hours), follow that by 5 days of wearing a mask when around others to minimize the risk of infecting people they encounter. The change is motivated by science demonstrating that the majority of SARS-CoV-2 transmission occurs early in the course of illness, generally in the 1-2 days prior to onset of symptoms and the 2-3 days after. 

We encourage you to read the press release in its entirety at: CDC Updates and Shortens Recommended Isolation and Quarantine Period for General Population


Updated Quarantine and Isolation Recommendations 

Osteogenesis Imperfecta (OI), while primarily known as a bone disease leading to frequent fractures, is at its core a genetic defect in collagen manufacture, assembly, and/or quantity. While collagen is important in the normal growth and mineralization of bone, collagen also makes up a large portion of the connective tissue of the lungs. Individuals with OI have underlying lung disease due to these collagen defects and, in fact, respiratory failure is the major cause of death in individuals with OI. (Source Resource: Sample Vaccine Letter). We understand the severity of respiratory health in individuals with OI. It is our goal to provide the most up to date information regarding quarantine and isolation recommendations based upon the CDC guidelines. 

The CDC notes the following regarding quarantine, and who is NOT required to do so:  

The information below is from the Centers for Disease Control and Prevention. 

Who does not need to quarantine? 

If you came into close contact with someone with COVID-19 and you are in one of the following groups, you do not need to quarantine. 

  • You are ages 18 or older and have received all recommended vaccine doses, including boosters and additional primary shots for some immunocompromised people. 
  • You are ages 5-17 years and completed the primary series of COVID-19 vaccines. 
  • You had confirmed COVID-19 within the last 90 days (you tested positive using a viral test). 

Source: CDC COVID-19 Quarantine and Isolation Webpage 

We encourage you to read the Quarantine section in its entirety at CDC COVID-19 Quarantine and Isolation. 

The CDC notes the following regarding quarantine, and who is required to do so: 

The information below is from the Centers for Disease Control and Prevention. 

Who should quarantine? 

If you come into close contact with someone with COVID-19, you should quarantine if you are in one of the following groups: 

  • You are ages 18 or older and completed the primary series of recommended vaccine, but have not received a recommended booster shot when eligible. 
  • You received the single-dose Johnson & Johnson vaccine (completing the primary series) over 2 months ago and have not received a recommended booster shot. 
  • You are not vaccinated or have not completed a primary vaccine series. 

Source: CDC COVID-19 Quarantine and Isolation Webpage 

We encourage you to read the Isolation section in its entirety at CDC COVID-19 Quarantine and Isolation.


Omicron 

The CDC noted the following regarding the spread of Omicron: 

The information below is from the Centers for Disease Control and Prevention. 

The Omicron variant likely will spread more easily than the original SARS-CoV-2 virus and how easily Omicron spreads compared to Delta remains unknown. CDC expects that anyone with Omicron infection can spread the virus to others, even if they are vaccinated or don’t have symptoms. (Source: Centers for Disease Control and Prevention Webpage-Omicron Variant: What You Need to Know 

We would like to encourage you to read this webpage in its entirety at Centers for Disease Control and Prevention Webpage-Omicron Variant: What You Need to Know 

COVID-19 and Mask 

The CDC notes that mask offer protection against all variants. Here at the OIF we are pleased that our second COVID-19 survey results showed that 82% of respondents wear a mask or facial covering all the time when they are in public or indoors and unable to socially distance. We encourage you to track the mask guidelines and community transmission levels in your area using the COVID-19 County Check Tool. 


Resources 

What’s the difference between quarantine and isolation? (VIDEO) 

Community-Based Testing Sites for COVID-19 Webpage from US Department of Health and Human Services 

Omicron Variant: What You Need to Know 

COVID-19 County Check 

Informational Bone China Tea Call

Celebrate National Hot Tea Month and the 30th anniversary of the OIF Bone China Tea campaign with Bone China Tea Host, Susie Wilson, for an informational call Sunday at 3pm ET! ☕
 
Join us for an
-Update on the Bone China Tea campaign
-Information on the NEW! Seasonal Bone China Tea Shop
-Order your invitations ?
-Cheers to 30 years of successful fundraising!
 

Edible Invitation: Clean Cooking, Clean Eating, A Demo + Dialogue RECORDING AVAILABLE

On December 6th, Culinary Nutritionist, Stefanie Sacks, MS, CNS, CDN hosted a community call titled Edible Invitation: Clean Cooking, Clean Eating, A Demo + Dialogue with OI community member, Susie Wilson, as her cooking partner. During this call, Stefanie explored adaptable culinary techniques, one-pot meals, food storage ideas and more. To watch the recording, click here.

For a copy of the recipe, please go to www.oif.org/edibleinvitation.