The Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston
Children's provides cancer risk assessment for children, comprehensive
recommendations for managing cancer risk in children, and psychosocial support for
families affected by hereditary cancer. We also conduct research into many
aspects of cancer risk and its management. We are one of the few cancer genetic
risk programs in the U.S. focused specifically on pediatric cancer risk.
Our goal is to help you determine whether your children are at risk of
cancer – and if so, what can be done either to help prevent cancer in your
children or to catch it early and address it quickly for the best possible
outcome.
We help you manage all aspects of genetic cancer risk – from consideration
of testing to monitoring to counseling. A visit to our program
usually includes time with both a physician and a genetic counselor, both of
whom have expertise in inherited cancer syndromes that affect children. We
are also one of the few programs of this type that includes a pediatric
psychologist who specializes in pediatric hereditary cancer. This
specialized consultation is a standard part of clinic visits offered to each
family.
We also provide consultation to
community-based providers who may be unfamiliar with the unique medical and psychosocial
issues that arise when a family receives a hereditary cancer diagnosis.
If
you or your doctor believe your child might have an inherited form of cancer or
be at increased risk for developing cancer – or if you are considering having
children and want to better understand the possible risk for your children – you
may wish to schedule an appointment with us.
Our program is recommended for children who have:
- A diagnosis or prior treatment for a rare
childhood cancer or brain tumor
- A diagnosis or prior treatment for a cancer of
any type plus a family history of cancer
- A strong family history of cancer
- A parent (or another relative) known to have a
cancer syndrome or a cancer gene mutation
The field of genetics is rapidly changing, and we provide advanced options in
genetic testing across the spectrum of new and established inherited cancer
syndromes. The syndromes include but are not limited to:
- DICER1 syndrome
- Hereditary retinoblastoma
- Li-Fraumeni syndrome
- Multiple endocrine neoplasia
- Paraganglioma/pheochromocytoma syndrome
- Von Hippel-Lindau syndrome
- PTEN hamartoma syndrome, including Cowden syndrome
- Polyposis syndromes, including familial adenomatous polyposis and juvenile polyposis
- Hereditary leiomyomatosis and renal cell cancer (HLRCC)
- Familial neuroblastoma (ALK)
- Congenital central hypoventilation syndrome (CCHS)
- RASopathies
- Congenital mismatch repair deficiency (CMMRD) or biallelic mismatch repair deficiency (BMMRD)
- Gorlin syndrome
- Rhabdoid tumor predisposition syndrome (RTPS)
Although our Pediatric Cancer Genetic Risk Program is focused on pediatric cancer risk,
adult family members may choose to visit Dana-Farber Cancer Institute's Center for Cancer Genetics and Prevention. Both programs work
closely together, allowing us to provide integrated care for families.
Our team includes pediatric oncologists, genetic counselors, psychologists, and other specialists from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute, and the Division of Genetics and Genomics at Boston Children's Hospital.
The core clinical team at Dana-Farber/Boston Children’s includes:
- Lisa Diller, MD, co-director and pediatric oncology institute physician
- Junne Kamihara, MD, PhD, co-director and pediatric oncology physician
- Brian Crompton, MD, pediatric oncology physician
- Aya Abu-El-Haija, MD, MPH, Dana-Farber Cancer Institute
- Allison O’Neill, MD, pediatric oncology physician
- Katherine A. Janeway, MD, MMSc, pediatric oncology senior physician
- Brian Delaney, PsyD
- Jill Brace O'Neill, MS, PPCNP-BC, pediatric nurse practitioner, Dana-Farber Cancer Institute
- Andrea Deleault Onufrychuk, APRN, MSN, FNP-BC, CBS
- Kayla Hamilton, MS, CGC
- Jaclyn Schienda, ScM, CGC, lead genetic counselor
- Katherine Schneider, MPH, CGC, genetic counselor
- Rebecca Vanderwall, MS, MPH, CGC, genetic counselor
- Katelyn Breen, MS, CGC
- Janine Kakishita, MS, CGC, Dana-Farber Cancer Institute
- Catherine Skefos, MA, MS, CGC, Dana-Farber Cancer Institute
Most case are reviewed by a larger multidisciplinary team composed of genetic counselors, geneticists, pediatric specialists, psychologists, and oncologists from Dana-Farber Cancer Institute and Boston Children’s Hospital. This larger team also forms the basis of expert referrals as needed and includes the following specialists:
- Judy Garber, MD, MPH, Director, Center for Cancer Genetics and Prevention, Dana-Farber Cancer Institute
- Huma Rana, MD, Clinical Director, Center for Cancer Genetics and Prevention, Dana-Farber Cancer Institute
- Stephanie (Newton) Coury, MS, CGC, genetic counselor, Boston Children’s Hospital
- Victor Fox, MD, Director, Pediatric Polyposis Program, Boston Children's Hospital
- Pamela Hawley, MS, CGC, genetic counselor, Boston Children’s Hospital
- David Miller, MD, PhD, geneticist, Boston Children’s Hospital
- Wen-Hann Tan, BMBS, geneticist, Boston Children’s Hospital
In recent years, researchers have made great strides in building our
understanding of how genetic factors influence cancer risk – and how we can
leverage new technologies for testing and screening. Our comprehensive Pediatric Cancer
Genetic Risk Program includes not only the clinical
care of children with cancer but incorporates research at the forefront of
genetic discovery.
Some of our research interests include:
- Multiplex sequencing to identify hereditary cancer
risk in pediatric cancer patients
- Screening with whole body
MRI for detection of primary tumors in children and adults with Li-Fraumeni
syndrome (LFS)
- Hereditary risk factors for thyroid cancer
- Support
for pediatric patients and families at risk of hereditary cancer
We offer appointments Monday-Friday. We will work with your
insurance company to obtain coverage; in most cases, insurance companies will
provide coverage.
Phone: 857-215-1353
Fax: 617-751-7046
Email: pedi_genetics@dfci.harvard.edu
Mailing
address:
450 Brookline Avenue
Shields Warren Building, Rm. SW331A
Boston, MA 02215
International
patients
Email pedi_international@dfci.harvard.edu,
call +1 617-355-5209, or visit our International Patient
Services web section to learn more about our
specialized services for international patients.