Adenosine Deaminase Deficiency

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Who is this for?
Show terms as
1FDA treatments1Active trials20Specialists8Treatment centers

Where are you in your journey?

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

Adenosine Deaminase Deficiency is treated with 1 medication in our database, including Revcovi. Medications are manufactured by Leadiant. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Adenosine Deaminase Deficiency treatment below.

Inheritance

Autosomal recessive

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

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

NORD ↗

FDA & Trial Timeline

1 event
Sep 2019An Observational LTFU Study for Patients Previously Treated With Autologous ex Vivo Gene Therapy for ADA-SCID

University of California, Los Angeles

TrialENROLLING BY INVITATION

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

Treatments

1 available

Revcovi

elapegademase-lvlr· Leadiant

* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Patients must be enrolled in Chiesi Total Care; have a valid pr

Clinical Trials

1 recruitingView all trials with filters →
Other1 trial
An Observational LTFU Study for Patients Previously Treated With Autologous ex Vivo Gene Therapy for ADA-SCID
Enrolling by Invitation
PI: Donald B. Kohn, M.D. (University of Califorina, Los Angeles) · Sites: Los Angeles, California; London

Specialists

20 foundView all specialists →
MH
Michael Hershfield
DURHAM, NC
Specialist
2 Adenosine Deaminase Deficiency publications
TM
Theodore B Moore
Specialist
2 Adenosine Deaminase Deficiency publications
KG
Kimberly C Gilmour
Specialist
2 Adenosine Deaminase Deficiency publications
SO
Satiro De Oliveira
Specialist
2 Adenosine Deaminase Deficiency publications
SA
Stuart Adams
Specialist
2 Adenosine Deaminase Deficiency publications
AA
Alessandro Aiuti
Specialist
2 Adenosine Deaminase Deficiency publications
HG
H Bobby Gaspar
ADRIAN, MI
Specialist
2 Adenosine Deaminase Deficiency publications
BF
Beatriz Campo Fernandez
Specialist
2 Adenosine Deaminase Deficiency publications
KC
Kenneth Cornetta
BLOOMINGTON, IN
Specialist
2 Adenosine Deaminase Deficiency publications
AT
Adrian J Thrasher
Specialist
2 Adenosine Deaminase Deficiency publications
DK
Donald B Kohn
NEW HAVEN, CT
Specialist
3 Adenosine Deaminase Deficiency publications
ES
Elizabeth Secord
DETROIT, MI
Specialist
2 Adenosine Deaminase Deficiency publications
JX
Jinhua Xu-Bayford
Specialist
2 Adenosine Deaminase Deficiency publications
EG
Elizabeth Garabedian
Specialist
2 Adenosine Deaminase Deficiency publications
DT
Dayna Terrazas
Specialist
2 Adenosine Deaminase Deficiency publications
JM
Joel Moss, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 11 active trials
LP
Lung-Ji Chang, Ph.D
Shenzhen, Guangdong
Specialist

Rare Disease Specialist

PI on 5 active trials
LB
Lauri Burroughs
Seattle, Washington
Specialist

Rare Disease Specialist

PI on 3 active trials
SM
Satiro De Oliveira, MD
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 1 active trial

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

Travel Grants

No travel grants are currently matched to Adenosine Deaminase Deficiency.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Adenosine Deaminase Deficiency

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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 Adenosine Deaminase Deficiency

What is Adenosine Deaminase Deficiency?

Adenosine Deaminase Deficiency is treated with 1 medication in our database, including Revcovi. Medications are manufactured by Leadiant. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Adenosine Deaminase Deficiency treatment below.

How is Adenosine Deaminase Deficiency inherited?

Adenosine Deaminase Deficiency follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Are there clinical trials for Adenosine Deaminase Deficiency?

Yes — 1 recruiting clinical trial is currently listed for Adenosine Deaminase Deficiency on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Adenosine Deaminase Deficiency?

20 specialists and care centers treating Adenosine Deaminase Deficiency are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Adenosine Deaminase Deficiency?

1 FDA-approved treatment and 1 patient support program are currently tracked on UniteRare for Adenosine Deaminase Deficiency. See the treatments and support programs sections for copay assistance, eligibility, and contact details.