JACOP, Japanese Consortium of Prion Disease (natural history study)

Key facts

• JACOP describes itself as a nationwide body for clinical research on prion disease, covering natural history, pathophysiology and development of new therapeutics.
• The steering committee has a chair (Hidehiro Mizusawa, NCNP) and eight members from Gifu University, Nagasaki University, a Tokyo clinic, Fukuoka University, Jichi Medical University, Tohoku University, Kudanzaka Hospital and Institute of Science Tokyo.
• The secretariat is hosted by NCNP Hospital in Kodaira, Tokyo; clinical and genetic information collected in the study is stored at NCNP.
• The April 2019 greeting from the steering committee states that an MHLW research project has run prion disease surveillance since 1999, that JACOP has worked with it on natural history since April 2017, and that follow-up often breaks down when patients change hospitals.
• The MHLW grants record for project 20FC2001 (FY2020 to FY2021, total grant 59 million yen, led by Masahito Yamada) states cooperation with JACOP as part of its objective and records that a natural history survey launched in FY2017 and was merged with the surveillance study. The record gives no JACOP-specific budget.
• Enrolment goes through the diagnosing facility after its ethics review, or through a route approved by the NCNP ethics committee where a facility cannot review or time is short.
• Natural history consent is described for patients with possible or probable diagnostic certainty, while surveillance consent covers all diagnosed patients.
• Follow-up design: examination and clinical update by the attending physician every 3 months with monthly telephone contact by a clinical research coordinator in the early phase, and every 6 months with contact every 2 months for slowly progressing cases.
• Participants are normally referred by the diagnosing doctor, or can start with their own doctor's support; inquiries go to the Prion Disease Surveillance Secretariat.
• The national patient and family association Sazanka no Kai publishes the natural history survey page and is linked from the JACOP site; the association page does not say it runs the survey.
• Search excerpts of MHLW research group reports give 65 natural history registrations over the three years to March 2017 and a cumulative 2,456 by March 2025 (unverified, PDFs not opened).
• The JACOP site links to MHLW-supported research groups, including one on early diagnostic criteria and non-invasive diagnosis (from April 2023) intended to support international physician-led trials, led from Nagasaki University.

Timeline

1. 2013JACOP website opened.
2. 2015Steering committee and secretariat changed, site redesigned.
3. 2017Natural history survey run jointly with MHLW surveillance begins (FY2017).
4. 2019Steering committee greeting published.
5. 2020Site records the research period for medical professionals changed to March 2024.
6. 2023Steering committee and related research groups pages updated.
7. 2024Attending-physician page and FAQ updated (29 October).
8. 2026Surveillance group consent explanation document updated to version 1.7 (24 July).