TBRS and DNMT3A Patient Registry: Data request form for academic institutions and researchers

TBRS and DNMT3A Patient Registry: Data request form for academic institutions and researchers

Thank you for your interest in the TBRS Community's registry data. Our registry data contains important information on and from patients with Tatton Brown Rahman Syndrome (TBRS), Heyn Sproul Jackson Syndrome (HESJAS), and other DNMT3A variants. Please complete the following form to apply for data access. Information provided will be reviewed by the TBRS Community Registry Committee.
Name

First NameLast Name
Email
example@example.com
Institution
Institution contact (name and email)
What is your proposed use for the TBRS and DNMT3A Patient Registry data? (include project description and aims)
I am requesting to use these data for

an IRB approved studypreliminary data for a grant applicationpreliminary data for an IRB proposalOther
I am interested in data from patients diagnosed with:

Tatton Brown Rahman syndrome (TBRS)Heyn Sproul Jackson syndrome (HESJAS)Other DNMT3A variantsAll of the above
Which surveys would you like access to?

Participant profile (demographics)DiagnosisMedical HistoryFamily Medical HistorySiblingsTreatmentGeneral HealthQuality of Life - AdultsQuality of Life - PediatricsPregnancy, Labor, and DeliveryCardiology and NeurologyImmunology, Hematology, and OncologyEmotional, Behavioral, and PsychiatricDevelopmentalOrthopedicNutritionSkin and Teeth
Which surveys would you like access to?

DiagnosisMother's PregnancyNewborn/InfancyGeneral HealthMedical HistoryFamily Medical HistoryDevelopmentalGrowthHeart/Blood VesselsBrain/Nervous SystemBehavior/PsychiatricBlood/BleedingCancerImmune SystemHormones/EndocrineBone/Cartilage/Connective TissueMuscleLungs/BreathingDigestive SystemKidney/Bladder/GenitalHead, Face, & NeckEyes/VisionEars/HearingSkinOral HealthRegressionDysautonomiaNutritionTreatmentSiblingsQuality of LifeAll of the above
Our registry also collects clinical reports and documentation from patients with DNMT3A germline variants. These include reports like screens, imaging data, testing reports, and visit summaries. We can also put out a call for a specific type of report to ask patients/families to upload this documentation.
Are you interested in receiving de-identified copies of clinical reports and documentation?

YesNo
What type(s) of report(s) are you interested in receiving?
We will contact you with regards to this request and coordinate any additional calls for reports, as needed.
If you publish from these data, we ask that you include TBRS Community as co-authors. Are you willing to agree to this request?

YesNo
Would you be willing to publish in open-access if possible? (This would allow our community and more individuals to have better access to the material)

YesNo
If unpublished, would you be willing to share results with our community?

YesNo
If you answered "No" to any of the above questions, please explain.
In an effort to increase transparency, collaboration, and resource sharing within the TBRS Collaborative Research Network, we would like to list all ongoing projects involving TBRS Community Registry Data on our website.

Information posted will include general project goals, name, email and institution. You may choose not to have this information posted, however, this may result in multiple projects being conducted of the same nature. It is therefore suggested that this information be posted on the TBRS website.

TBRS Community is not responsible for any duplicate studies, nor do we intend to deny data to any competing parties. However, we do encourage collaboration and open science in the effort to develop a better understanding of TBRS.
Are you comfortable with this information being made public on the TBRS website? You will have final approval of the wording before anything is published to the site.

YesNo
Thank you! We will review your application and you can expect a response in the coming weeks.
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