Call for On-site Research: Barth Syndrome Foundation 2026 Barth Syndrome International Conference

Question Title

The Barth Syndrome International Conference is the largest global gathering of Barth syndrome affected individuals. In past years, the conference has enabled researchers to recruit >20 affected individuals over the course of 3 days. For 2026, on-site research can be conducted from Monday through Wednesday, July 20-22, 2026.

Applications are being accepted on a ROLLING basis until the research rooms are filled (only 7 rooms are available), OR no later than March 27, 2026*, whichever occurs first.
*Final IRB approvals can be submitted at a later date.

Upon successful receipt of your application, you will receive an email confirmation within 48-hours. If not, please email Melissa.Huang@barthsyndrome.org to check the status of your application.

Question Title

* 1. Demographics/Principal Investigator Contact Information

Full Name

Designation (Prof/Dr/Mr/Mrs/Ms/Or specify)

Title (e.g., Assistant Professor, etc.)

Institution/Organization/Company

Department

Street Address

Unit

City

State/Province

Country

Phone

Email Address

Retype to Confirm Email Address

Question Title

* 2. Study Title

Question Title

* 3. Please indicate your collaborators/key study personnel, if applicable (otherwise, indicate N/A). List each individual's full name, institution, and email address. Separate each individual with a semicolon (;)

Question Title

* 4. Please indicate ALL funding source(s) for this study. Include the name of the funding organization and grant number, if applicable (otherwise, indicate N/A). Separate each funding source with a semicolon (;)

Question Title

* 5. Do you require supplemental support from BSF to carry out your study?

Yes (please upload your budget in the next field).

Question Title

* 6. If you require supplemental financial support to carry out your study, please upload your budget table and budget narrative. Use this template.

PDF, DOC, DOCX file types only.

Choose File

Question Title

* 7. Does the study have an IRB approval?

*IRB application must include the reporting of severe adverse events, incorporation of GUIDs, return of results to participants, and commitment to data sharing, which are consistent with requirements outlined in BSF's Clinical Trials and Human Subjects Research Policy.

BSF is happy to work with the study team to incorporate the above requirements into a new IRB application or existing IRB revision. Contact melissa.huang@barthsyndrome.org for assistance.

No, but I plan to submit an IRB application with BSF's requirements*

Yes, but I plan to revise the IRB application with BSF's requirements*

Yes, and my IRB conforms to BSF's requirements*

Other (please provide some information on your IRB situation)

Question Title

* 8. Please upload your study proposal. This document should include: Purpose of the study, Procedures, Duration, Risks/Discomforts, and Benefits. Those with existing IRB approval may upload their approved protocol, consent forms, and any additional study-relevant documents. Please merge all of these elements into a single document.

PDF, DOC, DOCX file types only.

Choose File

Question Title

* 9. Please provide logistical details about your study, including how many individuals you intend to recruit, if you require control (non-BTHS affected) participants, estimated time it will take for each participant to complete the study, and whether there are any personnel (e.g., sonographer, phlebotomist), how much space you need, or any equipment (machines, centrifuge, freezer) considerations.

Question Title

* 10. Due to limited research rooms available at the venue, we may ask if you are open to sharing a research room with other studies. Please indicate your preferences below.

Our study must be conducted in a research room of our own

We prefer a research room of our own, but are open to sharing a research room with other studies

Our study can be conducted in a shared research room with other studies

Other (please specify)

Question Title

* 11. All on-site research conducted at the 2026 Barth Syndrome International Conference must meet the requirements specified in BSF's Clinical Trials and Human Subjects Research Policy. Upon approval, you will be required to acknowledge agreement to this policy by signature. Those who receive funding will be subject to BSF's research grant policies.

Please read the statement below and use the check box to indicate your agreement.

I have read and agree to abide BSF's Clinical Trials and Humans Subjects Research Policy if my study is approved to conduct on-site research at the 2024 Barth Syndrome International Conference.

Page1 / 1

100% of survey complete.