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Cure Blau Syndrome Foundation
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Research opportunities

Donate a sample to the global Blau biobank.

Your blood or skin cells can be studied by researchers anywhere in the world. We partner with Coriell to collect and store cells from people with Blau syndrome, to speed up fundamental research and drug discovery.

Email the NIGMS RepositoryRead Coriell’s FAQ
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Our partner

A world leader in biobanking.

The Cure Blau Syndrome Foundation partners with Coriell, a world leader in biobanking (the collection of biosamples for research), to collect and store cells from patients with Blau syndrome. Your samples will be available to researchers worldwide, accelerating fundamental research into Blau syndrome with the goal of faster drug discovery.

The NIGMS Repository at Coriell is regarded as the most diverse collection of cell lines and DNA available to the international research community. For nearly 65 years, Coriell has set the gold standard in collecting, processing, distributing, cryogenically preserving and managing information about human biomaterials used in research. It provides scientists with well-characterized cell cultures and DNA preparations, annotated with rich phenotypic data.

Who can donate

  • Patients can donate on their own behalf by working directly with Repository staff. You need to contact the Repository first and say you are interested.
  • Family members of someone with Blau can donate too, as long as the affected person is also submitting a sample.
  • Clinicians and investigators with access to Blau patients can submit samples, including existing cell lines from earlier studies.

How to donate

Five steps from your inbox to the lab.

  1. Step 1: Contact the Repository

    Email the NIGMS Repository at NIGMS@coriell.org to say you would like to donate blood, skin biopsy tissue, or both. Staff will walk you through the process.

  2. Step 2: Receive your collection kit

    The kit has everything you need to store and send your sample safely: blood or skin tissue tubes, a prepaid shipping label and all the required paperwork.

  3. Step 3: Have your sample collected

    At your next doctor's appointment, have a blood draw or a skin punch biopsy (2 to 4 mm of tissue, usually from the forearm). Talk with your doctor beforehand so collection goes smoothly.

  4. Step 4: Package it and send it back

    Follow the kit instructions to package the sample and ship it with the prepaid label.

  5. Step 5: Include clinical information

    Send as much clinical information as you are willing to share. Physician summary letters and genetic testing results are the most common. The more detail attached to each sample, the more useful the cells are to future researchers.

Email the NIGMS Repository

Questions

What donors ask most.

More answers on Coriell’s website

What does it cost to submit a sample?

There is no cost to submit a sample. The Repository provides the collection and shipping materials and covers shipping. It does not cover fees for the collection itself, such as venipuncture or doctor fees.

Is donation approved by an ethics or institutional review board?

Yes. The NIGMS Repository at Coriell is funded by the NIH and follows ethical standards led by Coriell's Institutional Review Board. Any researcher who wants to use Coriell's cell lines must sign a Material Transfer Agreement to confirm they are qualified.

Is my personal information protected?

Yes. Samples are de-identified as soon as they reach Coriell, and all personal identifying information is removed. Coriell holds a Certificate of Confidentiality from the National Institutes of Health to protect the privacy of every donor, and will not give your name or other identifying information to the scientists who receive samples. Some health information, such as age at collection, gender, diagnosis, race and ethnicity or country of origin, is shared with scientists to help their studies.

Can I have my sample taken during routine blood work?

Absolutely. We encourage you to combine your donation with routine lab work to make it as easy as possible for the patient.

Who can collect a skin biopsy?

Most doctors can perform a skin biopsy, though dermatologists generally have the most experience. The Repository usually receives skin punch biopsies, which use a small tool to take 2 to 4 mm of tissue from the forearm. Speak with your doctor beforehand so the biopsy runs smoothly.

Who has access to the samples?

Every qualified investigator in the world. The NIGMS philosophy is that the more researchers who can study rare disease samples, the more likely a breakthrough becomes. Coriell also tracks publications that use its samples and links them to each sample's page, so you can see what research is being done.

What if I no longer want my samples kept in the biobank?

You can have your samples withdrawn from the Repository at any time. Contact the NIGMS Repository at NIGMS@coriell.org for details.

Also enrolling

Research study examining: Mechanisms of Disease of the Human Immune System

Currently enrolling. Contact the Foundation to learn more about taking part.

Email the Foundation

Every dollar, every hour, every voice matters.

Rare disease research only moves when families and supporters push it. Your gift funds research directly, and your story in the registry gives scientists data they cannot get anywhere else.

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