Category: Research

What A Year!

Posted on by Mose Fidler

Dear Friend,

As we near the end of 2020, we are taking a moment to reflect on what has certainly been a historic year. We are thankful for the generosity of individuals like you that allows the OI Foundation to continue providing programs and services that benefit all members of the OI community. We have worked hard to pivot and expand our programs to meet the needs of the OI community during this global crisis and want to share a few of our accomplishments this year. Please click here to view the OIF’s list of accomplishments.

If you have not had the chance to remember us with a gift this time of year, please take a moment to do so at  www.oif.org/donate. Thank you again for your support!

COVID-19 Survey Results

Posted on by Mose Fidler

Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.

Important Findings:

  • A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
  • The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at www.vaccinefinder.org.
  • Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at www.oif.org/podcast) as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.

To view the full COVID-19 Survey results, click here.

The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry. 

CLICK HERE TO SIGN UP FOR THE OI REGISTRY

 

Join the OI Registry

Posted on by OI Foundation

Individuals with OI (18 and older) and parents of children with OI are encouraged to join the OI Registry. The OI Registry is a database of individuals with OI who are interested in participating in OI research. Once you are enrolled, you will begin to receive information on upcoming studies and online surveys about OI. Your participation in these studies helps move OI research forward.

 

Click here to join the OI Registry

If you have any questions, please contact the OI Foundation at bonelink@oif.org or (844)889-7579.

Final Reminder: Survey Opportunities

Posted on by Mose Fidler

Final Reminder: Survey Opportunities for the OI Community

The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.

Orthopedic Patient Survey

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Please take a moment to complete this survey. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.

Please take 5-10 minutes to complete the survey by Sunday, October 18, 2020.

Complete the Survey

Rare Diseases Clinical Research Network COVID-19 Survey

How are you being impacted by the novel coronavirus pandemic?
Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

Complete the Survey

 

Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting these surveys. The mission of the OIF is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community. We are available to answer questions on this or any other research announcement.

Please contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.

Survey Opportunity: Help Orthopedic Surgeons Learn About OI

Posted on by Mose Fidler

The OI Foundation would like to bring your attention to a new survey to help orthopedic surgeons learn more about OI.

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.

Please take 5-10 minutes to complete the survey at https://www.surveymonkey.com/r/J9653VK.

This survey will be available until Sunday, October 18, 2020.

OI Foundation PCOR Project Approved for Supplemental Funding Award

Posted on by Mose Fidler

OI Foundation Project, Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community, Approved for Supplemental Funding Award

The Osteogenesis Imperfecta Foundation is excited to announce that supplemental funding has been approved for the Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community project to include investigating the impact of the COVID-19 pandemic on the osteogenesis imperfecta community. This important project advances the collaboration of the OI Foundation (Tracy Hart, CEO, Lead) and Co-Leads Dr. Laura Tosi, Director, Bone Health Program, Children’s National Hospital and Dr. Bryce Reeve, Director, Center for Health Measurement, Duke University. The goals of the supplemental funding award are to assist the rare bone disease community in developing COVID-19 content and outreach, expand the OI PCOR toolkit to include COVID-19-specific resources, expand OI clinic outreach to disseminate content on COVID-19, and create and disseminate OI-relevant COVID-19 content.

Click here to learn more.

CPAG Webinar: An Introduction to Clinical Trials. 

Posted on by Mose Fidler

Are you interested in learning about how clinical trials work?

Watch the Coalition of Patient Advocacy Groups (CPAG) Webinar: An Introduction to Clinical Trials.
Tracy Hart, OIF CEO serves as the chair of the Coalition of Patient Advocacy Groups Steering Committee (CPAG). CPAG is the collective representation of patient groups affiliated with the consortia of the Rare Diseases Clinical Research Network (RDCRN), a National Institutes of Health (NIH)-funded research network. CPAG members influence the direction of the Rare Diseases Clinical Research Network as a whole.

CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from Rare Diseases Network (RDCRN) on Vimeo.