NCT02837705

Brief Summary

The human Prion diseases can be classified into sporadic, acquired and inherited forms. Inherited forms usually manifest in higher age so there have to be factors preventing Prion propagation in young mutation carriers. Antibodies against the flexible tail of Prions have been shown to be protective in mice. The investigators intend to screen mutation carriers and controls for the presence of Prion autoantibodies.

Trial Health

93
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
213

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Sep 2015

Typical duration for all trials

Geographic Reach
7 countries

7 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 2015

Completed
10 months until next milestone

First Submitted

Initial submission to the registry

July 7, 2016

Completed
13 days until next milestone

First Posted

Study publicly available on registry

July 20, 2016

Completed
2.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 15, 2018

Completed
5 months until next milestone

Study Completion

Last participant's last visit for all outcomes

March 1, 2019

Completed
Last Updated

May 24, 2023

Status Verified

May 1, 2023

Enrollment Period

3.1 years

First QC Date

July 7, 2016

Last Update Submit

May 23, 2023

Conditions

Outcome Measures

Primary Outcomes (1)

  • Anti-Prion protein autoantibody levels

    Baseline, up to 90 years

Study Arms (2)

carriers of a mutation in the Prion gene

Carriers of a mutation in the Prion gene who are either symptomatic or pre-symptomatic and who do either know or not know their mutation status.

Other: blood draw

family members of carriers of a mutation in the Prion gene

Relatives of confirmed PrP mutation carriers who carry two wild type alleles.

Other: blood draw

Interventions

carriers of a mutation in the Prion genefamily members of carriers of a mutation in the Prion gene

Eligibility Criteria

Age1 Year - 99 Years
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Male or female carriers of a mutation in the Prion protein gene of any age and their wild type siblings.

You may qualify if:

  • Relatives of patients of genetic Prion diseases
  • Obtained informed consent

You may not qualify if:

  • No informed consent

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (7)

UCSF Memory and Aging Center

San Francisco, California, United States

Location

Medical University Graz

Graz, Austria

Location

University Medical Center Göttingen

Göttingen, Germany

Location

CJD Foundation Israel

Pardés H̱anna Karkur, Israel

Location

Istituto di Ricerche Farmacologiche

Milan, Italy

Location

Slovak Medical University

Bratislava, Slovakia

Location

Institute of Neuropathology

Zurich, Switzerland

Location

Related Publications (1)

  • Frontzek K, Carta M, Losa M, Epskamp M, Meisl G, Anane A, Brandel JP, Camenisch U, Castilla J, Haik S, Knowles T, Lindner E, Lutterotti A, Minikel EV, Roiter I, Safar JG, Sanchez-Valle R, Zakova D, Hornemann S, Aguzzi A; THAUTAN-MC Study Group. Autoantibodies against the prion protein in individuals with PRNP mutations. Neurology. 2020 Oct 6;95(14):e2028-e2037. doi: 10.1212/WNL.0000000000009183. Epub 2020 Feb 25.

MeSH Terms

Conditions

Prion Diseases

Interventions

Blood Specimen Collection

Condition Hierarchy (Ancestors)

Central Nervous System InfectionsInfectionsCentral Nervous System DiseasesNervous System DiseasesNeurodegenerative Diseases

Intervention Hierarchy (Ancestors)

Specimen HandlingClinical Laboratory TechniquesDiagnostic Techniques and ProceduresDiagnosisPuncturesSurgical Procedures, OperativeInvestigative Techniques

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
CROSS SECTIONAL
Target Duration
1 Day
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

July 7, 2016

First Posted

July 20, 2016

Study Start

September 1, 2015

Primary Completion

October 15, 2018

Study Completion

March 1, 2019

Last Updated

May 24, 2023

Record last verified: 2023-05

Data Sharing

IPD Sharing
Will share

Locations