Rare pervasive developmental disorder

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ORPHA:168778
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1Active trials1Specialists8Treatment centers

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

Rare pervasive developmental disorder is an uncommon condition that falls within the broader group of pervasive developmental disorders (PDDs). These disorders affect how the brain develops and processes information, leading to challenges in social interaction, communication, and behavior. This category was historically used to describe children and individuals who showed significant developmental differences that did not fit neatly into more well-known diagnoses such as autism spectrum disorder or Rett syndrome. Symptoms typically appear in early childhood and can include difficulty relating to other people, trouble with verbal and nonverbal communication, repetitive behaviors, and restricted interests. Some individuals may also experience delays in learning, unusual responses to sensory input, and difficulty adapting to changes in routine. Because this is a broad and rare classification, the specific features can vary widely from person to person. There is no single cure for rare pervasive developmental disorders. Treatment focuses on managing symptoms and supporting development through behavioral therapies, speech and language therapy, occupational therapy, and educational support. Some individuals may also benefit from medications to manage specific symptoms such as anxiety, attention difficulties, or irritability. Early intervention is considered very important for improving long-term outcomes. As medical understanding has evolved, many conditions previously classified under this umbrella have been reclassified, making this a particularly rare and sometimes outdated diagnostic label.

Also known as:

Key symptoms:

Difficulty with social interactionsTrouble making or keeping friendsDelayed speech or language developmentDifficulty understanding nonverbal cues like facial expressions or gesturesRepetitive movements or behaviorsStrong preference for routines and resistance to changeRestricted or unusual interestsUnusual responses to sounds, textures, or other sensory inputDifficulty with imaginative or pretend playTrouble expressing emotions appropriatelyLearning difficulties or intellectual disability in some casesAnxiety or emotional outburstsDifficulty with fine or gross motor skills

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

FDA & Trial Timeline

4 events
Oct 2025Effects Of DPPT On Motor Skills And Sleep In Children With Autism

Riphah International University — NA

TrialRECRUITING
Jan 2025Multi-cohort, Single-arm, Phase II Study of the Efficacy and Side Effects of Cisplatin Plus Gemcitabine in the Treatment of PD1 Failure or Intensive Treatment of Some Rare Tumors

Sheng Zhang — PHASE2

TrialRECRUITING
Nov 2024Multi-cohort, Single-arm Phase II Study of Albumin-paclitaxel, Ifosfamide, and Cisplatin in the Treatment of Rare Advanced Tumors

Fudan University — PHASE2

TrialRECRUITING
Apr 2024Result of tDCS in ASD Children With Comorbidities Like PANDAS, Rare Genetic Diseases or Autoimmune Disorders

Spanish Foundation for Neurometrics Development — PHASE1

TrialENROLLING BY INVITATION

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

Treatments

No FDA-approved treatments are currently listed for Rare pervasive developmental disorder.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
N/A1 trial
Effects Of DPPT On Motor Skills And Sleep In Children With Autism
N/A
Actively Recruiting
PI: AIZA ZAMIR, MS-PT (Riphah International University) · Sites: Lahore, Punjab Province · Age: 612 yrs

Specialists

1 foundView all specialists →
AM
AIZA ZAMIR, MS-PT
Lahore, Punjab Province
Specialist

Rare Disease Specialist

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 Rare pervasive developmental disorder.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare pervasive developmental disorder

Disease timeline:

New recruiting trial: OPTImal Treatment of Sinus VENOSUS Defect

A new clinical trial is recruiting patients for Rare pervasive developmental disorder

New recruiting trial: Multi-cohort, Single-arm, Phase II Study of the Efficacy and Side Effects of Cisplatin Plus Gemcitabine in the Treatment of PD1 Failure or Intensive Treatment of Some Rare Tumors

A new clinical trial is recruiting patients for Rare pervasive developmental disorder

New recruiting trial: Multi-cohort, Single-arm Phase II Study of Albumin-paclitaxel, Ifosfamide, and Cisplatin in the Treatment of Rare Advanced Tumors

A new clinical trial is recruiting patients for Rare pervasive developmental disorder

New trial: Effects Of DPPT On Motor Skills And Sleep In Children With Autism

Phase NA trial recruiting. Wilbarger Deep Pressure and Proprioceptive Technique (DPPT)

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.

Questions for your doctor

Bring these to your next appointment

  • Q1.What specific type of pervasive developmental disorder does my child have, and how does it differ from autism spectrum disorder?,Should we pursue genetic testing to look for an underlying cause?,What therapies do you recommend, and how often should they occur?,Are there any medications that might help with specific symptoms?,What educational supports or accommodations should we request at school?,How will this condition change as my child grows older?,Are there any clinical trials or research studies we should consider?

Common questions about Rare pervasive developmental disorder

What is Rare pervasive developmental disorder?

Rare pervasive developmental disorder is an uncommon condition that falls within the broader group of pervasive developmental disorders (PDDs). These disorders affect how the brain develops and processes information, leading to challenges in social interaction, communication, and behavior. This category was historically used to describe children and individuals who showed significant developmental differences that did not fit neatly into more well-known diagnoses such as autism spectrum disorder or Rett syndrome. Symptoms typically appear in early childhood and can include difficulty relating

At what age does Rare pervasive developmental disorder typically begin?

Typical onset of Rare pervasive developmental disorder is childhood. Age of onset can vary across affected individuals.

Are there clinical trials for Rare pervasive developmental disorder?

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

Which specialists treat Rare pervasive developmental disorder?

1 specialists and care centers treating Rare pervasive developmental disorder are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.