Submitting Samples

Submission Forms

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  Submission Form - Investigator (1401-02 Rev I)

  Biorepository	NIGMS
  Filename	1401-02 Rev I_Investigators_Submission_Form.pdf

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  Submission Form - Investigator (1401-02 Rev I)
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  Submission Form - Donor (1401-133 Rev D)

  Biorepository	NIGMS
  Filename	1401-133 Rev D DTPR Submission Form.pdf

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  Submission Form - Donor (1401-133 Rev D)
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  Submission Form - Donor (Spanish, 1401 - 141 Rev B)

  Biorepository	NIGMS
  Filename	1401-141 Rev B DTPR Submission Form ES.pdf

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  Submission Form - Donor (Spanish, 1401 - 141 Rev B)
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  Submission Form - General (Spanish, 1401-130 Rev C)

  Biorepository	NIGMS
  Filename	1401-130 Rev C_NIGMS_Submission_Form_ES.pdf

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  Submission Form - General (Spanish, 1401-130 Rev C)
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  Submission Form - Anonymized Samples (1401-48 Rev A)

  Biorepository	NIGMS
  Filename	1401-48 Rev A_Anonymized Submission Form.pdf

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  Submission Form - Anonymized Samples (1401-48 Rev A)
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  Submission Form - iPSC Samples (1401-101 Rev I)

  Biorepository	NIGMS
  Filename	1401-101 Rev I NIGMS HGCR iPSC Submission Form.pdf

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  Submission Form - iPSC Samples (1401-101 Rev I)

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  Informed Consent Form (1401-63 Rev H)

  Biorepository	NIGMS
  Filename	1401-63 Rev H_Informed_Consent_NIGMS_HGCR_updated PI_3-26-21.pdf

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  Informed Consent Form (1401-63 Rev H)
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  Informed Consent Form (Spanish, 1401-132 Rev C)

  Biorepository	NIGMS
  Filename	1401-132 Rev C_Informed_Consent_NIGMS_HGCR_ES_updated PI_3-26-21.pdf

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  Informed Consent Form (Spanish, 1401-132 Rev C)

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  Assent Form (1401-64 Rev C)

  Biorepository	NIGMS
  Filename	1401-64_Rev C_Assent_NIGMS_HGCR.pdf

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  Assent Form (1401-64 Rev C)
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  Assent Form (Spanish, 1401-134 Rev A)

  Biorepository	NIGMS
  Filename	1401-134_Rev A_Assent_NIGMS_HGCR_ES.pdf

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  Assent Form (Spanish, 1401-134 Rev A)

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  Informed Consent for the Transfer of Existing Specimens (1401-25 Rev G)

  Biorepository	NIGMS
  Filename	1401-25 Rev G_Transfer_Consent_NIGMS_HGCR.pdf

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  Informed Consent for the Transfer of Existing Specimens (1401-25 Rev G)
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  Informed Consent for the Transfer of Existing Specimens (Spanish, 1401-135 Rev B)

  Biorepository	NIGMS
  Filename	1401-135 Rev B_Transfer_Consent_NIGMS_HGCR_Spanish Version_updated PI_3-26-21.pdf

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  Informed Consent for the Transfer of Existing Specimens (Spanish, 1401-135 Rev B)
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  Informed Consent Requirements for External Submitters (1401-83 Rev C)

  Biorepository	NIGMS
  Filename	1401-83 Rev C_Requirements_Informed_Consent_Ext_Sub_NIGMS_HGCR.PDF

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  Informed Consent Requirements for External Submitters (1401-83 Rev C)

Clinical Data Elements Forms

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  General Clinical Data Elements Form (1401-57 Rev B)

  Biorepository	NIGMS
  Filename	1401-57 Rev B_CDE General.pdf

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  General Clinical Data Elements Form (1401-57 Rev B)
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  General Clinical Data Elements Form (Spanish, 1401-131 Rev C)

  Biorepository	NIGMS
  Filename	1401-131 Rev C_NIGMS HGCR General CDE _ES.pdf

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  General Clinical Data Elements Form (Spanish, 1401-131 Rev C)
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  Chromosomal Abnormality Clinical Data Elements (1401-70 Rev B)

  Biorepository	NIGMS
  Filename	1401-70_Rev_B_NIGMS_Chrom_Abn._CDE.pdf

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  Chromosomal Abnormality Clinical Data Elements (1401-70 Rev B)
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  Chromosomal Abnormality Clinical Data Elements (Spanish, 1401-136 Rev A)

  Biorepository	NIGMS
  Filename	1401-136 Rev A_NIGMS Chrom Abn. CDE_ES.pdf

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  Chromosomal Abnormality Clinical Data Elements (Spanish, 1401-136 Rev A)
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  Neurology Clinical Data Elements for CMD Biobank (1401-81 Rev D)

  Biorepository	NIGMS
  Filename	1401-81 Rev D_CMD Biobank Neurologist CDE.pdf

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  Neurology Clinical Data Elements for CMD Biobank (1401-81 Rev D)
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  Rett Syndrome Clinical Data Elements (1401-80)

  Biorepository	NIGMS
  Filename	1401-80 Rev C_Rett Syndrome CDE.pdf

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  Rett Syndrome Clinical Data Elements (1401-80)
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  Smith-Magenis Syndrome Clinical Data Elements (1401-75 Rev B)

  Biorepository	NIGMS
  Filename	1401-75 Rev B_SMS CDE.pdf

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  Smith-Magenis Syndrome Clinical Data Elements (1401-75 Rev B)
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  Propionic Acidemia Clinical Data Elements (1401-99 Rev C)

  Biorepository	NIGMS
  Filename	1401-99 Rev C_Propionic Acidemia Clinical Data Elements.pdf

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  Propionic Acidemia Clinical Data Elements (1401-99 Rev C)
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  Pitt Hopkins CDE (1401-116 Rev A)

  Biorepository	NIGMS
  Filename	1401-116 Rev A_Pitt Hopkins CDE.pdf

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  Pitt Hopkins CDE (1401-116 Rev A)

Guidelines

• General Submission Guidelines
• Guidance on Research Involving Coded Private Information or Biological Specimens (OHRP external link)
• Guidance on Protections for Human Subjects
• Submission of Non-Identifiable Materials to the Repository

Policies

• Policy for the Responsible Collection, Storage, and Research Use of Samples from Identified Populations for the NIGMS Human Genetic Cell Repository

Privacy Rule

• Office of Civil Rights - Summary of HIPAA Privacy Rule (H&HS external link)
• Privacy Rule Frequently Asked Questions

Frequently Asked Questions

• FAQ about Lymphoblastoid Cell Cultures
• FAQ about Fibroblast Cell Cultures
• FAQ about Human Subjects Research

Other Information

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  The NIGMS Human Genetic Cell Repository Brochure - Information for patients about the Repository

  Biorepository	NIGMS
  Filename	NIGMS HGCR Donation Brochure 2019 update - 8-20 final.pdf

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  The NIGMS Human Genetic Cell Repository Brochure - Information for patients about the Repository
• The NIGMS Human Genetic Cell Repository at the Coriell Institute
• Help Build a Research Resource for Chromosome 15q duplications
• The Congenital Muscle Disease Biobank-Myotubular and Centronuclear Myopathy
• The Congenital Muscle Disease Biobank-Nemaline Myopathy