Rare parkinsonian syndrome due to neurodegenerative disease

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:306666
Who is this for?
Show terms as
5Active trials8Treatment centers

Where are you in your journey?

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

Overview

Rare parkinsonian syndrome due to neurodegenerative disease is a group of uncommon conditions that share features with Parkinson's disease but are caused by different underlying brain changes. These syndromes involve the gradual loss of nerve cells in the brain, leading to movement problems such as slowness, stiffness, tremor, and difficulty with balance. Unlike typical Parkinson's disease, these rare forms may not respond well to standard Parkinson's medications and often come with additional symptoms that set them apart. This category includes several distinct conditions such as progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and dementia with Lewy bodies (DLB), among others. Each of these has its own pattern of symptoms, but they all share the core feature of parkinsonism — meaning they cause movement difficulties similar to Parkinson's disease. Patients may also experience problems with thinking, speech, swallowing, eye movements, or autonomic functions like blood pressure control and bladder function. Treatment is mainly supportive and aimed at managing symptoms, as there are currently no cures or proven disease-modifying therapies for most of these conditions. Levodopa, the main drug used in Parkinson's disease, may provide limited or no benefit. Physical therapy, occupational therapy, and speech therapy play important roles in maintaining function and quality of life. Research is ongoing to better understand these diseases and develop new treatments.

Key symptoms:

Slowness of movementMuscle stiffness or rigidityTremor at rest or with movementDifficulty with balance and frequent fallsProblems with walking and coordinationSlurred or slow speechDifficulty swallowingChanges in thinking or memoryAbnormal eye movements or difficulty looking up or downLow blood pressure when standing up (dizziness or fainting)Bladder problems or urinary incontinenceSleep disturbancesDepression or mood changesLoss of facial expressionInvoluntary muscle contractions or abnormal postures

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

5 events
Jan 2025tDCS Effect on Psychotic Symptoms in Dementia With Lewy Bodies (DLB), and Impacts on Caregiver Burden

Association de Recherche Bibliographique pour les Neurosciences — NA

TrialRECRUITING
Oct 2023Medical Decision Making in Multiple System Atrophy

Medical University Innsbruck — NA

TrialRECRUITING
Jun 2022Observational Study in Multiple System Atrophy

H. Lundbeck A/S

TrialACTIVE NOT RECRUITING
Oct 2020Insulin Resistance in Multiple System Atrophy

University Hospital, Bordeaux — NA

TrialRECRUITING
Sep 2012Modifiable Variables in Parkinsonism (MVP)

Bastyr University

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease.

5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

5 recruitingView all trials with filters →
N/A3 trials
Medical Decision Making in Multiple System Atrophy
N/A
Actively Recruiting
PI: Alessandra Fanciulli, MD PhD (Medizinische Universität Innsbruck) · Sites: Innsbruck, Austria · Age: 3099 yrs
tDCS Effect on Psychotic Symptoms in Dementia With Lewy Bodies (DLB), and Impacts on Caregiver Burden
N/A
Actively Recruiting
PI: Sandrine LOUCHART de la CHAPELLE, MD, PhD (Memory Clinic and Gerontologic center, Princess Gr) · Sites: Monaco · Age: 6099 yrs
Insulin Resistance in Multiple System Atrophy
N/A
Actively Recruiting
· Sites: Bordeaux · Age: 3099 yrs
Other2 trials
Observational Study in Multiple System Atrophy
Active
PI: Email contact via H. Lundbeck A/S (LundbeckClinicalTrials@Lundbeck.com) · Sites: Beijing; Beijing +6 more · Age: 4075 yrs
Modifiable Variables in Parkinsonism (MVP)
Actively Recruiting
PI: Laurie K Mischley, ND, PhD, MPH (Bastyr University) · Sites: Kenmore, Washington · Age: 1999 yrs

No specialists are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 parkinsonian syndrome due to neurodegenerative disease.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Rare parkinsonian syndrome due to neurodegenerative diseaseForum →

No community posts yet. Be the first to share your experience with Rare parkinsonian syndrome due to neurodegenerative disease.

Start the conversation →

Latest news about Rare parkinsonian syndrome due to neurodegenerative disease

No recent news articles for Rare parkinsonian syndrome due to neurodegenerative disease.

Follow this condition to be notified when news becomes available.

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.Which specific type of parkinsonian syndrome do I have, and how was this determined?,Would genetic testing be helpful for me or my family members?,What symptoms should I watch for that would indicate the disease is progressing?,Are there any clinical trials I might be eligible for?,What therapies (physical, occupational, speech) do you recommend, and how often?,How should we plan for future care needs, including advance directives?,What can be done to reduce my risk of falls and swallowing problems?

Common questions about Rare parkinsonian syndrome due to neurodegenerative disease

What is Rare parkinsonian syndrome due to neurodegenerative disease?

Rare parkinsonian syndrome due to neurodegenerative disease is a group of uncommon conditions that share features with Parkinson's disease but are caused by different underlying brain changes. These syndromes involve the gradual loss of nerve cells in the brain, leading to movement problems such as slowness, stiffness, tremor, and difficulty with balance. Unlike typical Parkinson's disease, these rare forms may not respond well to standard Parkinson's medications and often come with additional symptoms that set them apart. This category includes several distinct conditions such as progressive

At what age does Rare parkinsonian syndrome due to neurodegenerative disease typically begin?

Typical onset of Rare parkinsonian syndrome due to neurodegenerative disease is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Rare parkinsonian syndrome due to neurodegenerative disease?

Yes — 5 recruiting clinical trials are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.