NCT00001778

Brief Summary

Objective: Human T-lymphotropic virus type-I-associated myelopathy / tropical spastic paraparesis (HAM/TSP) is a rare neurologic disorder that affects less than 5% of patients infected with the HTLV-I virus. The purpose of this protocol is to study the natural history of HAM/TSP by monitoring clinical progression of patients longitudinally. Additionally, we will attempt to define the virological and immunological changes of HAM/TSP. Study Population: Patients with HAM/TSP who fulfill World Health Organization diagnostic criteria are eligible to participate in this protocol. Asymptomatic seropositive individuals and individuals with indeterminate HTLV-1 serology are also eligible to participate. Design and Outcome Measures: A longitudinal assessment of clinical, virological and immunological progression in HAM/TSP will be accomplished through periodic testing and evaluation. Asymptomatic seropositive individuals, those with seroindeterminate HTLV-I serology and normal volunteers may serve as controls. Longitudinal standardized neurological examinations will be performed. Longitudinal samples of serum, plasma, and lymphocytes may be obtained from participants. Lumbar punctures may be performed on all participants. These samples will be used virological and immunological assays. A focus is on the relationships between the characteristics of viral infection, the immune response, and the genetic makeup.

Trial Health

75
On Track

Trial Health Score

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

Enrollment
750

participants targeted

Target at P75+ for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

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

April 6, 1998

Completed
1.6 years until next milestone

First Submitted

Initial submission to the registry

November 3, 1999

Completed
1 day until next milestone

First Posted

Study publicly available on registry

November 4, 1999

Completed
Last Updated

May 7, 2026

Status Verified

December 30, 2025

First QC Date

November 3, 1999

Last Update Submit

May 6, 2026

Conditions

Keywords

Immune ResponseSero-IndeterminantTransmissionHTLV-1HTLV-1 Associated MyelopathyNatural HistoryHTLV-IHAM/TSP

Outcome Measures

Primary Outcomes (1)

  • To characterize the baseline features of patients with HTLV infection with regards to clinical features, imaging studies, immunological markers, and viral studies.

    To characterize the baseline features of patients with HTLV infection with regards to clinical features, imaging studies, immunological markers, and viral studies.

    each study visit

Secondary Outcomes (1)

  • Change in proviral load

    each study visit

Study Arms (3)

healthy volunteers

At least 18 years old and have no history of any medical illness that may confound study results or make participation in this protocol impossible

individuals seropositive for HTLV

Positive HTLV-1 ELISA followed by a positive Western Blot

individuals with indeterminate HTLV sero-status

Positive HTLV ELISA but a Western Blot that only partially fulfills criteria

Eligibility Criteria

Age18 Years - 120 Years
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Individuals sero-positive for HTLV, individuals with indeterminate HTLV sero-status, and healthy volunteers are eligible to participate in this protocol. Some individuals sero-positive for HTLV may have associated diseases including but not limited to HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) and HTLV associated inflammatory myositis.

You may qualify if:

  • Participants that meet one of the following criteria:
  • Test positive for HTLV infection (positive HTLV-1 ELISA followed by a positive Western blot)
  • Positive HTLV ELISA but a Western Blot that only partially fulfills the above criteria (seroindeterminate)
  • Have a family member/significant other who is HTLV positive, and may have been exposed to the virus
  • Healthy volunteer AND
  • Willingness to participate in the protocol evaluations and procedures.

You may not qualify if:

  • Unwillingness or inability to participate in the protocol evaluations and procedures.
  • The presence of any medical, social, or psychiatric conditions that in the opinion of the investigator may affect the safety of the patients or compliance with the protocol.
  • Patients/healthy volunteers under the age of 18 are excluded.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

National Institutes of Health Clinical Center

Bethesda, Maryland, 20892, United States

RECRUITING

Related Publications (3)

  • Gessain A, Barin F, Vernant JC, Gout O, Maurs L, Calender A, de The G. Antibodies to human T-lymphotropic virus type-I in patients with tropical spastic paraparesis. Lancet. 1985 Aug 24;2(8452):407-10. doi: 10.1016/s0140-6736(85)92734-5.

    PMID: 2863442BACKGROUND
  • Osame M, Matsumoto M, Usuku K, Izumo S, Ijichi N, Amitani H, Tara M, Igata A. Chronic progressive myelopathy associated with elevated antibodies to human T-lymphotropic virus type I and adult T-cell leukemialike cells. Ann Neurol. 1987 Feb;21(2):117-22. doi: 10.1002/ana.410210203.

    PMID: 2881513BACKGROUND
  • Iwasaki Y. Pathology of chronic myelopathy associated with HTLV-I infection (HAM/TSP). J Neurol Sci. 1990 Apr;96(1):103-23. doi: 10.1016/0022-510x(90)90060-z.

    PMID: 2351985BACKGROUND

Related Links

MeSH Terms

Conditions

HTLV-I InfectionsParaparesis, Tropical Spastic

Condition Hierarchy (Ancestors)

Deltaretrovirus InfectionsRetroviridae InfectionsRNA Virus InfectionsVirus DiseasesInfectionsImmunologic Deficiency SyndromesImmune System DiseasesMyelitisCentral Nervous System InfectionsCentral Nervous System DiseasesNervous System DiseasesSpinal Cord DiseasesNeuroinflammatory Diseases

Study Officials

  • Steven Jacobson, Ph.D.

    National Institute of Neurological Disorders and Stroke (NINDS)

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Daniel S Reich, M.D.

CONTACT

Steven Jacobson, Ph.D.

CONTACT

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
NIH
Responsible Party
SPONSOR

Study Record Dates

First Submitted

November 3, 1999

First Posted

November 4, 1999

Study Start

April 6, 1998

Last Updated

May 7, 2026

Record last verified: 2025-12-30

Locations