Registry
The iHOPE-Kids Registry
A registry of children with rare heart-rhythm disorders. Studying patients together — not one by one — helps doctors find causes, better treatments, and care plans for more kids.
Who can take part
Anyone with an unexplained or undiagnosed heart-rhythm disorder — living or deceased.
Families who lost someone to a sudden, unexplained cardiac event.
People already diagnosed with an arrhythmia.
Children and adults alike.
Participants from any country.
How enrollment works
- 1Step 1 of 5
Complete a consent form
Tell us how your sample and information may be used — you stay in control throughout.
- 2Step 2 of 5
Share basic medical information
A bit of history, so your case can be studied alongside similar ones.
- 3Step 3 of 5
Submit a DNA sample
A simple blood draw or cheek swab is all it takes.
- 4Step 4 of 5
Receive collection instructions
We send step-by-step instructions and the biobank address at Texas Children's Hospital.
- 5Step 5 of 5
Optionally, add a family sample
Sometimes a relative's sample helps reveal inheritance patterns.
DNA biobank
Preserve the chance to find answers
Biobanking stores a DNA sample — from a blood draw or cheek swab — so genetic testing is possible now, or later as the science advances.
Timing matters
Samples are best collected within about a year of a loved one's passing. After that, DNA can degrade and may no longer be testable.
Two ways to use a sample
Test now, store the rest
Send part of the sample for testing now, and keep the rest in the biobank for the future.
Store the whole sample
Keep the whole sample in the biobank, so testing can be done later as new tests emerge.
Use a biobank, or not?
A medical examiner stores a decedent's samples
Option 1 · Use a biobank
The family can store the samples in a biobank.
Testing can provide a diagnosis or identify a cause of death.
Surviving relatives who may also be at risk gain answers.
Families can get earlier, potentially life-saving care.
Option 2 · Don't use a biobank
The samples are discarded.
The decedent and at-risk relatives remain undiagnosed.
Undiagnosed relatives may experience sudden cardiac events.
The path to answers is blocked.
Where samples are kept
Samples are kept at a Texas Children's Hospital lab in Houston. A coroner or medical examiner can often help collect one — ask early, since retention timelines vary.
Contact us about biobankingReady to take part?
Reach our team at ihopekids@bcm.edu and we will guide you through joining.