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Molecules

NIGMS BIOBANK REPOSITORY

Help foster research by contributing to the ASH1L Syndrome Biobank

The US National Institute of General Medical Sciences Repository (NIGMS Human Genetic Cell Repository) has started a ASH1L Patient Biobank for patients with ASH1L syndrome located anywhere in the world. This enables scientists to access and study these cells for research. All the samples stay completely anonymous.

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NIGMS Human Genetic Cell Repository is currently accepting blood samples from ASH1L children and adults. They are also accepting blood samples from ASH1L patients, parents and siblings as well. 

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NIGMS Human Genetic Cell Repository does not conduct research with the blood samples but they provide the blood samples to researchers/scientists to conduct further study. Leading ASH1L researchers can request access to the blood sample in order to

  • Study the cells cultured from the samples 

  • Understand the disease and its role in human body

  • Develop a therapeutic intervention

  • Test the efficacy of a therapeutic intervention

How NIGMS can help ASH1L Researchers

Watch this video where our leading ASH1L Researchers share the importance of donating your blood samples to NIGMS Human Genetic Cell Repository and how it will enable them advance their ASH1L Research.

Dr. Judy Liu, Dr. Sofia Lizarraga and Dr. Carin Papendorp share their valued inputs on fostering ASH1L research.

01.

Request order the kit

Email NIGMS at nigms@coriell.org

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03.

Fill out the forms

Make sure you fill in all the details.

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02.

Schedule a blood draw

Visit your doctor for a blood draw

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04.

Send the kit back to NIGMS

Send the kit back free of charge

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Email Kit Request Form
Schedule blood draw

COLLECTING A SAMPLE

  1. The NIGMS Repository will provide blood and biopsy sample collection kits, free of charge. Kits contain all necessary materials to collect and ship the samples back to Coriell, including: collection tubes, required paperwork, shipping materials, and a pre-paid FedEx return shipping label.

  2. Please review the following Collection and Shipping Instructions in advance of your appointment. You may bring them with you to your appointment as reference for your doctor.

  3. Schedule an exam with your clinician to have blood drawn or a skin biopsy taken

    • The easiest way to handle the blood collection is to schedule a wellness exam or other clinical exam in which blood will be drawn, such as to check vitamin D level, iron, cholesterol, etc.  Also it is best to have the blood draw done during a visit to the doctor.

    • Try to schedule the collection(s) for any Monday, Tuesday, or Wednesday that isn't near a U.S. holiday. Make sure you have the collection kit with you when the blood collection is scheduled and ask the clinician to fill the tubes provided in the kit. 

    • Coriell cannot provide a referral for organizations such as Quest or LabCorp, so it is best to have blood draw performed at a doctor's visit.

    • We do not expect there to be an extra cost doing it this way, but if you are charged, we are able to reimburse you up to $40 USD if you send us the receipt.

  4. Bring the collection kit with you to your appointment and ask the clinician to fill the tubes provided in the kit.

 

  • Draw blood into two 10mL ACD yellow-top tubes for adults, or two 5mL EDTA purple-top tubes (provided with kit) for children.

    • 4mL minimum volume in at least 1 tube is needed to establish a cell line.

  • Ask the Lab Assistant (or the nurse) who is drawing your blood to label each tube with:

    • Name​

    • Date of Birth

    • Date of blood draw

  • Blood samples must be kept at room temperature. Do NOT refrigerate blood samples.

FORMS TO BE FILLED

Submission Form
Informed Consent Form
Assent Form
Clinical Data Elements Form (General)

Form that must be submitted for each donor and describes donor's basic information

Consent form that must be read completely and signed by each donor

Consent form that must be signed by a donor that is between the ages of 7-17 and able to do so. This must be accompanied by the Informed Consent Form.

Form that should be submitted for affected individuals only and details this individual's clinical symptoms

Forms with the Kit

RETURNING THE KIT

  1. Return the collection kit with the sample donations to your local FedEx location, with the pre-paid shipping label attached (provided with kit).

    • See the visual step-by-step instructions on how to package a blood sample

    • Samples should be shipped via FedEx Priority Overnight Shipping to:

           NIGMS Project Manager
           Coriell Institute for Medical Research
           403 Haddon Avenue
           Camden, New Jersey 08103
       

  2. Please email at NIGMS@coriell.org with the FedEx tracking number from the shipment so NIGMS can be prepared for its arrival.
     

  3. Once the sample has been received at Coriell, a team member will respond with an email confirmation of receipt.

Return the kit

FAQs

What is NIGMS?

  • The repository is a research biobank.

  • This means that they collect blood samples from individuals with genetic diseases and make cell lines and DNA for scientists to use in their studies. They accept blood (for lymphoblasts) from affected individuals and their family members and relatives from domestic and international locations around the world.

  • NIGMS does not conduct research here at Coriell, but do provide the materials for scientists to perform research on a variety of genetic diseases.

  • NIGMS also does not provide sample donors with any results or information regarding their genetic disease. You may designate a researcher to receive a free vial of the cell culture once the sample is accepted into the NIGMS Repository catalogue.

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For an overview, please click on this link: NIGMS-Repository-Overview.

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  1. An affected individual must have a diagnosed heritable disease or chromosomal abnormality

    • Unaffected family members (e.g. parents and siblings) may donate samples along with an affected individual

  2. There must be clinical documentation of the disorder

    • The more clinical information that is submitted with a donation, the more valuable it will be to researchers

    • The most common documents are genetic testing results and physician summary letters

    • Unaffected family members do not need to submit medical documents, unless they share a common variant with the affected person that is relevant to the disorder

  3. The NIGMS Repository accepts donations of blood samples, skin biopsies, and early passages of previously established cell lines

Who is eligible to donate?

What are the contents of the kit?

Blood kit contents.png

How long will it take for the kit to arrive?

Please allow 1-2 weeks for the kit request to be processed and received.

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