Constitutional mismatch repair deficiency syndrome

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ORPHA:252202OMIM:619101D80.8
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1FDA treatments5Active trials33Specialists8Treatment centers2Financial resources

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Constitutional mismatch repair deficiency (CMMRD) syndrome, also known as biallelic mismatch repair deficiency (BMMRD), is a rare and severe cancer predisposition syndrome caused by biallelic (homozygous or compound heterozygous) germline mutations in one of the four mismatch repair (MMR) genes: MLH1, MSH2, MSH6, or PMS2. Unlike Lynch syndrome, where a single defective copy of an MMR gene is inherited, individuals with CMMRD carry mutations in both copies, leading to a dramatically elevated and early-onset cancer risk. The condition follows an autosomal recessive inheritance pattern. CMMRD affects multiple body systems. The hallmark features include childhood-onset malignancies, particularly hematological cancers (such as T-cell lymphomas and acute leukemias), brain tumors (most commonly high-grade gliomas), and gastrointestinal cancers (including colorectal and small bowel cancers), often occurring in the first or second decade of life. Many patients develop multiple primary cancers over their lifetime. In addition to cancer predisposition, affected individuals frequently display features reminiscent of neurofibromatosis type 1 (NF1), including café-au-lait macules and, less commonly, other skin findings, which can lead to initial misdiagnosis. Some patients may also exhibit signs of immunodeficiency, which is reflected in the ICD-10 classification under D80.8. Diagnosis is established through genetic testing of the MMR genes, microsatellite instability analysis, and immunohistochemistry of tumor tissue. Functional assays and the presence of characteristic clinical features support the diagnosis. Treatment involves cancer-directed therapy tailored to the specific malignancy, including surgery, chemotherapy, and radiation, though tumors in CMMRD may respond differently to standard protocols. Surveillance protocols with frequent and comprehensive cancer screening beginning in early childhood are critical for early detection. Emerging evidence suggests that immune checkpoint inhibitors may be effective in hypermutated CMMRD-associated tumors due to their high tumor mutational burden. Genetic counseling is essential for affected families.

Also known as:

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Mar 2026Immunotherapy for Surgery Avoidance in Vulnerable dMMR Endometrial Cancer

Women's Hospital School Of Medicine Zhejiang University — PHASE2

TrialNOT YET RECRUITING
Jan 2026Factors Influencing Immunotherapy Response in dMMR/MSI-H Gastric/Gastroesophageal Junction Adenocarcinoma

Shanghai Zhongshan Hospital — PHASE2

TrialNOT YET RECRUITING
Sep 2025Immunotherapy (Toripalimab) for Reducing Recurrence Risk After Surgery for Mismatch Repair Deficient Stage IIB, IIC, or III Colon Cancer

Emory University — PHASE2

TrialRECRUITING
Feb 2025Pembrolizumab With Olaparib as Combined Therapy in Metastatic Pancreatic Cancer

Cambridge University Hospitals NHS Foundation Trust — PHASE2

TrialRECRUITING
Jan 2024Liquid Biopsy and Machine Learning for Early Colorectal Cancer, Adenomas, Lynch Cancers, and Residual Disease Detection

San Raffaele University

TrialRECRUITING
Jan 2024Neoadjuvant Immunotherapy for T4 dMMR Colon Cancer

Peking Union Medical College Hospital — NA

TrialRECRUITING
Jun 2023Study of HRO761 Alone or in Combination in Cancer Patients With Specific DNA Alterations Called Microsatellite Instability or Mismatch Repair Deficiency.

Novartis Pharmaceuticals — PHASE1

TrialACTIVE NOT RECRUITING
May 2023Perioperative Chemotherapy Plus Toripalimab for dMMR Locally Advanced Gastric or Esophagogastric Junction Adenocarcinoma

Yu jiren — PHASE2

TrialRECRUITING
Sep 2022T-regulatory Cell Depletion with E7777 Combined with Pembrolizumab in Recurrent or Metastatic Solid Tumors

Alexander B Olawaiye, MD — PHASE1, PHASE2

TrialRECRUITING
Mar 2021Evaluation of the Reliability of the Determination of MisMatch Repair Deficiency Status by Endoscopic Biopsies in Oesophagus and Gastric Adenocarcinoma.

Assistance Publique - Hôpitaux de Paris — NA

TrialNOT YET RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

1 available

IMFINZI

durvalumab· AstraZeneca Pharmaceuticals LP
in combination with carboplatin and paclitaxel followed by IMFINZI as a single agent, for the treatment of adult patients with primary advanced or recurrent endometrial cancer that is mismatch repair

in combination with carboplatin and paclitaxel followed by IMFINZI as a single agent, for the treatment of adult patients with primary advanced or recurrent endometrial cancer that is mismatch repair deficient (dMMR) as determined by an FDA-approved test

Clinical Trials

5 recruitingView all trials with filters →
Phase 22 trials
Danvatirsen and Durvalumab in Treating Patients With Advanced and Refractory Pancreatic, Non-Small Cell Lung Cancer, and Mismatch Repair Deficient Colorectal Cancer
Phase 2
Active
PI: David S Hong (M.D. Anderson Cancer Center) · Sites: Houston, Texas · Age: 1899 yrs
Perioperative Chemotherapy Plus Toripalimab for dMMR Locally Advanced Gastric or Esophagogastric Junction Adenocarcinoma
Phase 2
Actively Recruiting
PI: Jiren Yu (First Affiliated Hospital of Zhejiang University) · Sites: Hangzhou, Zhejiang; Hangzhou, Zhejiang +6 more · Age: 1880 yrs
Phase 11 trial
Pembrolizumab in Treating Younger Patients With Recurrent, Progressive, or Refractory High-Grade Gliomas, Diffuse Intrinsic Pontine Gliomas, Hypermutated Brain Tumors, Ependymoma or Medulloblastoma
Phase 1
Active
PI: Eugene I Hwang (Pediatric Brain Tumor Consortium) · Sites: Los Angeles, California; Palo Alto, California +10 more · Age: 130 yrs
N/A1 trial
Neoadjuvant Immunotherapy for T4 dMMR Colon Cancer
N/A
Actively Recruiting
· Sites: Beijing, Beijing Municipality; Beijing · Age: 1875 yrs
Other1 trial
Liquid Biopsy and Machine Learning for Early Colorectal Cancer, Adenomas, Lynch Cancers, and Residual Disease Detection
Actively Recruiting
PI: Giulia Martina Cavestro, MD, PhD (IRCCS San Raffaele Hospital) · Sites: Milan, Lombardy; Milan, Lombardy +2 more · Age: 1899 yrs

Specialists

Showing 25 of 33View all specialists →
YM
Ying Jin, MD.,PhD
Specialist
PI on 1 active trial
NA
Nilofer S Azad
BALTIMORE, MD
Specialist
PI on 3 active trials1 Constitutional mismatch repair deficiency syndrome publication
JY
Jiren Yu
Specialist
PI on 3 active trials385 Constitutional mismatch repair deficiency syndrome publications
DH
David S Hong
Specialist
PI on 7 active trials37 Constitutional mismatch repair deficiency syndrome publications
LS
Lin Shen
Specialist
PI on 7 active trials110 Constitutional mismatch repair deficiency syndrome publications
MM
Matthew B. Rettig, MD
LOS ANGELES, CA
Specialist
PI on 3 active trials
GP
Giulia Martina Cavestro, MD, PhD
Specialist
PI on 2 active trials
KM
Kim E. Nichols, MD
Memphis, Tennessee
Specialist

Rare Disease Specialist

PI on 2 active trials
EH
Eugene I Hwang
Specialist
PI on 1 active trial16 Constitutional mismatch repair deficiency syndrome publications
SP
Selin Kurnaz, PhD
Specialist
PI on 1 active trial
MF
Marietta Franco
Specialist
PI on 2 active trials21 Constitutional mismatch repair deficiency syndrome publications
OM
Oluwadunni E. Emiloju, MBBS, MS
ROCHESTER, MN
Specialist
PI on 1 active trial
UM
Udai S Kammula, MD
Pittsburgh, Pennsylvania
Specialist

Rare Disease Specialist

PI on 2 active trials
PC
Pippa Corrie
Specialist
PI on 2 active trials
AM
Alexander Olawaiye, MD
PITTSBURGH, PA
Specialist
PI on 1 active trial1 Constitutional mismatch repair deficiency syndrome publication
KP
Keyan Salari, MD, PhD
BOSTON, MA
Specialist
PI on 1 active trial
ED
Eav Lim, DO
YORK, PA
Specialist
PI on 1 active trial
PG
Paul Goodfellow
Specialist
PI on 2 active trials2 Constitutional mismatch repair deficiency syndrome publications
MP
Marta Pineda
CHESTERFIELD, MO
Specialist
2 Constitutional mismatch repair deficiency syndrome publications
FD
Felice D'Arco
Specialist
2 Constitutional mismatch repair deficiency syndrome publications
LN
Logine Negm
Specialist
2 Constitutional mismatch repair deficiency syndrome publications
VB
Vanessa Bianchi
SYOSSET, NY
Specialist
2 Constitutional mismatch repair deficiency syndrome publications
WF
William D Foulkes
Specialist
2 Constitutional mismatch repair deficiency syndrome publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

2 resources
IMFINZI(durvalumab)AstraZeneca Pharmaceuticals LP

Yervoy

Bristol-Myers Squibb Company

Yervoy Patient Support (BMS Access Support)

Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

No travel grants are currently matched to Constitutional mismatch repair deficiency syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Constitutional mismatch repair deficiency syndrome

Disease timeline:

New recruiting trial: Immunotherapy (Toripalimab) for Reducing Recurrence Risk After Surgery for Mismatch Repair Deficient Stage IIB, IIC, or III Colon Cancer

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Liquid Biopsy and Machine Learning for Early Colorectal Cancer, Adenomas, Lynch Cancers, and Residual Disease Detection

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Lynch Syndrome X-Talk of Enteral Mucosa With Immune System

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Perioperative Chemotherapy Plus Toripalimab for dMMR Locally Advanced Gastric or Esophagogastric Junction Adenocarcinoma

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Neoadjuvant Immunotherapy for T4 dMMR Colon Cancer

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Immune Checkpoint Inhibitors for Organ Preservation in Non-metastatic dMMR/MSI-H Gastric or Colon Cancers

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: Pembrolizumab With Olaparib as Combined Therapy in Metastatic Pancreatic Cancer

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

New recruiting trial: T-regulatory Cell Depletion with E7777 Combined with Pembrolizumab in Recurrent or Metastatic Solid Tumors

A new clinical trial is recruiting patients for Constitutional mismatch repair deficiency syndrome

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Constitutional mismatch repair deficiency syndrome

What is Constitutional mismatch repair deficiency syndrome?

Constitutional mismatch repair deficiency (CMMRD) syndrome, also known as biallelic mismatch repair deficiency (BMMRD), is a rare and severe cancer predisposition syndrome caused by biallelic (homozygous or compound heterozygous) germline mutations in one of the four mismatch repair (MMR) genes: MLH1, MSH2, MSH6, or PMS2. Unlike Lynch syndrome, where a single defective copy of an MMR gene is inherited, individuals with CMMRD carry mutations in both copies, leading to a dramatically elevated and early-onset cancer risk. The condition follows an autosomal recessive inheritance pattern. CMMRD af

How is Constitutional mismatch repair deficiency syndrome inherited?

Constitutional mismatch repair deficiency syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Constitutional mismatch repair deficiency syndrome typically begin?

Typical onset of Constitutional mismatch repair deficiency syndrome is childhood. Age of onset can vary across affected individuals.

Are there clinical trials for Constitutional mismatch repair deficiency syndrome?

Yes — 5 recruiting clinical trials are currently listed for Constitutional mismatch repair deficiency syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Constitutional mismatch repair deficiency syndrome?

25 specialists and care centers treating Constitutional mismatch repair deficiency syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Constitutional mismatch repair deficiency syndrome?

1 patient support program are currently tracked on UniteRare for Constitutional mismatch repair deficiency syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.