Resources

Dig Deeper and Learn: Cancer Genetics

Breast Cancer 

Education: ACOG: BRCA1/BRCA2 Mutations FAQACS: Breast CancerCDC: Breast Cancer | Sharsheret: Your Jewish Genes | Sharsheret: How Do I Tell My Children about My Cancer Gene? | Sharsheret: The Jewish Breast & Ovarian Cancer Community 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | ASBS: Consensus Guideline for Genetic Testing for Hereditary Breast Cancer | ACOG: Practice Bulletin for Hereditary Breast and Ovarian Cancer | ACMG: Points to consider: is there evidence to support BRCA1/2 and other inherited breast cancer genetic testing for all breast cancer patients?

Colorectal Cancer 

Education: CDC: What is Colon Cancer?ACS: Colorectal CancerMayo Clinic: Colon Cancer 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | NCCN: Colorectal Cancer Screening | BJM Rapid Recommendations: Colorectal cancer screening with faecal immunochemical testing, sigmoidoscopy or colonoscopy: a clinical practice guideline | ACP: Screening for Colorectal Cancer in Asymptomatic Average-Risk Adults: A Guidance Statement from the American College of Physicians

Ovarian Cancer

Education: ACOG: Ovarian Cancer FAQ ACOG: Endometrial Cancer FAQ | CDC: Gynecologic Cancers  | National Ovarian Cancer Coalition 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | Society of Gynecologic Oncology: Risk Assessment for Inherited Gynecologic Cancer Predispositions

Pancreatic Cancer

Education: ACS: Pancreatic Cancer  | Mayo Clinic: Pancreatic Cancer | Pancreatic Cancer Action Network 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer

Prostate Cancer

Education: ACS: Prostate Cancer | CDC: Prostate Cancer  | Prostate Health Education Network (PHEN) | Us Too  | Zero Cancer 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | NCCN: Prostate Cancer

Stomach Cancer

EducationACS: Stomach Cancer  | Mayo Clinic: Stomach Cancer  | NCI: Stomach Cancer  | No Stomach for Cancer 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer

Uterine/Endometrial Cancer

Education: ACOG: Ovarian Cancer FAQ ACOG: Endometrial Cancer FAQ | CDC: Gynecologic Cancers  | National Ovarian Cancer Coalition 

Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | Society of Gynecologic Oncology: Risk Assessment for Inherited Gynecologic Cancer Predispositions

Other Guidelines & Statements Related to Cancer Genetics

ACMG: Referral Indications for Cancer Predisposition Assessment

ASCO: Genetic and Genomic Testing for Cancer Susceptibility 

CDC: Applications for Hereditary Breast and Ovarian Cancer

Lynch Syndrome

ACOG: Practice Bulletin for Lynch Syndrome

ASCRS: Surgical Treatment for Patients with Lynch Syndrome

CDC: Applications for Lynch Syndrome

 

Dig Deeper and Learn: Prenatal Genetics

Prenatal Genetic Screening

ACOG: Prenatal Genetic Screening FAQ | ACOG: Prenatal Genetic Diagnosis Tests FAQ Cooper Genomics: Preimplantation Genetic Diagnosis (video)* | Myriad: Prenatal Genetic Screening Patient Education (video)Victor Center: Jewish Genetic Diseases 

Extended Carrier Screening

ACOG: Carrier Screening FAQ 

Newborn Screening

Baby’s First Test

Trisomy

NORD: Trisomy 13 SyndromeGHR: Trisomy 13 | NORD: Trisomy 18 Syndrome | GHR: Trisomy 18GHR: Down SyndromeNational Down Syndrome Society |Trisomy 18 Foundation | SOFT 

Cystic Fibrosis

ACOG: Cystic Fibrosis FAQ | Claire’s Place Foundation (Cystic Fibrosis) | Cystic Fibrosis FoundationCysticFibrosis.com 

Fragile X Syndrome

NORD: Fragile X SyndromeGHR: Fragile X Syndrome | CDC: What is Fragile X Syndrome? | National Fragile X Foundation | Xtraordinary Joy 

Spinal Muscular Atrophy (SMA)

NORD: Spinal Muscular Atrophy | GHR: Spinal Muscular AtrophyMDA: Spinal Muscular AtrophyCure SMATogether in SMA 

Hemoglobinopathies

CDC: Sickle Cell DiseaseCDC: Thalassemia | GHR: Alpha Thalassemia | GHR: Beta ThalassemiaCDC: Hemoglobinopathies Project

Guidelines for Prenatal Genetics

NSGC: Prenatal Cell-free DNA Screening
ACMG: Noninvasive Prenatal Screening for Fetal Aneuploidy (2016 Update)
ACOG: Carrier Screening in the Age of Genomic Medicine
ACOG: Carrier Screening for Genetic Conditions
ACMG: Position Statement on Prenatal/Preconception Expanded Carrier Screening
ACMG: Carrier Screening of individuals of Ashkenazi Jewish descent
ASRM: Pre-pregnancy Counseling
ACOG: Microarrays and Next-Generation Sequencing: The Use of Advanced Genetic Diagnostic Tools in Obstetrics and Gynecology
ACOG: Practice Bulletin on Prenatal Diagnostic Testing for Genetic Disorders
ACMG: Statement on Guidance for Genetic Counseling in Advanced Paternal Age 

Family History Information 

CDC: Family Health History

NIH: Why is it important to know my family medical history?

Tools for Collecting Family Health History 

FamHis

Surgeon General: My Family Health Portrait

NIH: Families SHARE

Family HealthLink

TapGenes

Discussing Family Health History & Diagnoses with Children 

Proactive Genes

Adoptee and Unexpected Results Resources

WatershedDNA

Research Opportunities 

All of Us – A National, NIH-led effort to gather data from one million or more people living in the United States to accelerate research and improve health. Open to anyone who currently lives in the United States.

The UBC Genetic Connections Study A survey-based study on individuals’ experiences with direct-to-consumer genetic testing. Open to anyone who has purchased a direct-to-consumer genetic testing kit or is at any stage in the testing process. 

The New York Stem Cell Foundation – An opportunity for volunteers to contribute to stem cell research. Must visit Manhattan location to provide a sample. 

ClinicalTrials.Gov – A database of privately and publicly funded clinical studies conducted around the world.

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* Resources are chosen based on educational value and do not constitute an endorsement of any laboratory.