Latest updates

What has happened in prion disease over the last 12 months, newest first, drawn from the Atlas. The date is when the event happened. Follow a link for the full record and its sources.

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October 2026

  1. FundingCJD Foundation research grants and fellowships programFull grant and fellowship applications due.
  2. OrganizationsCJD FoundationFull applications and fellowship applications due.
  3. TrialsCLIME-CJD multimodal retrospective CJD cohortLatest record version seen by this worker.
  4. RulesFDA Type C Surrogate Endpoint meetingSurrogate endpoint table page current as of this date.
  5. Treatment researchALN-6457Estimated start of the Phase 1/2 trial.
  6. OrganizationsAlnylam PharmaceuticalsEstimated trial start; the record read on 2026-10-31 still showed not yet recruiting.
  7. OrganizationsRegeneron PharmaceuticalsEstimated start of the ALN-6457 trial.
  8. TrialsALN-6457Estimated start.
  9. OrganizationsFDA Office of Orphan Products DevelopmentNext receipt date for RFA-FD-25-020.
  10. FundingAnthropic AI for Science programOfficial rules last updated.
  11. FundingFDA Orphan Products Grants ProgramSecond application date under RFA-FD-25-020; passed as of 2026-11-01.
  12. Treatment researchNSC500No registered trial found on ClinicalTrials.gov; Union Register status unconfirmed.
  13. TrialsAGL2017-88353-PSix Europe PMC searches and the IRTA news feed find no publication, abstract or news item reporting an outcome of the bioassay.
  14. Treatment researchADAM8-based gene therapySearches find no peer-reviewed paper, preprint or registry entry for this gene therapy.
  15. TestsPRNP gene sequencingDepth pass: NPDPSC, Florey, Fulgent, DNA Labs India, GeneReviews and UCL pages read.
  16. TestsRT-QuIC with recombinant human PrP E219K substrate for human prion strain discriminationSearch for later use or citation of the substrate found no 2026 paper and no laboratory adoption record.
  17. OrganizationsAll India Institute of Medical SciencesDepartment page lists Mritunjai Kumar as Associate Professor and Head.
  18. OrganizationsBlueprint GeneticsStand alone PRNP single gene test page returns not found.
  19. OrganizationsCeGaT GmbHOlder dementia panel URL returns not found; current panel sits under neurodegenerative diseases as NDD17.
  20. OrganizationsDNA Labs IndiaFour PRNP NGS records confirmed in NCBI GTR; NABL directory unreachable.
  21. OrganizationsFulgent GeneticsFulgent PRNP test pages return HTTP 403 to automated fetch; details rest on search excerpts.
  22. TestsCSF RT-QuICEvidence read for this dossier.
  23. OrganizationsCJD International Support AllianceCJDISA posts a community statement on PRiSM opening to pre-symptomatic participants.
  24. OrganizationsDNA Labs IndiaEntity first recorded in the Atlas from the PRNP vendor listing.
  25. Treatment researchAnti-PrP antibody PRN100CJD Foundation drug development page lists PRN100 as not currently enrolling.
  26. Treatment researchPrP-lowering divalent siRNAPRiSM pre-symptomatic arm announced.
  27. TrialsPRiSMPre-symptomatic arm announced as opening.
  28. Treatment researchAAV zinc finger repressor of PRNPSale reported closed.
  29. OrganizationsEli Lilly and CompanySangamo reports the Lilly sale has closed.
  30. OrganizationsSangamo TherapeuticsLilly and PTC sales reported closed.
  31. Treatment researchanle138b oligomer modulatorTOPAS-MSA registry record last updated; status active, not recruiting.
  32. TestsBlood markersUCH-L1 biomarker paper published.
  33. OrganizationsLaboratorio Central de VeterinariaNew designation order in force: Algete named for TSEs and for PRNP analysis in the sheep resistance programme; Real Decreto 148/2023 repealed.
  34. OrganizationsUniversidad de Zaragoza prion research group and Centro de Encefalopatias y Enfermedades Transmisibles EmergentesNew national reference laboratory order in force; TSEs assigned to Algete, Zaragoza not named.
  35. RulesReal Decreto 21/2013New article 14 in force; the designation order names Algete for PRNP analysis in the programme.
  36. RulesReal Decreto 3454/2000Amended articles 3.1, 3.2 and 6.3.c in force; national TSE reference laboratory now set by the designation order, which names Algete.
  37. TestsParaffin-embedded tissue blotPET blot listed among Homburg prion and aggregate diagnostics (page read 2026-10-17).
  38. OrganizationsKorea Disease Control and Prevention AgencyKDCA pre-procedure CJD infection-risk screening guide dated 7 October (secondary, unopened).
  39. OrganizationsUniversity of Texas Health Science Center at HoustoneNeuro paper: TMEM106B loss does not alter prion disease in mice.
  40. PapersMartheswaran T et al. 2020Europe PMC lists 13 citing articles.
  41. FundingUS Department of Defense National Prion Research ProgramCDMRP funding table, updated 21 October 2026, still shows National Prion only for FY02.
  42. RulesEMA guideline on the investigation of manufacturing processes for plasma-derived medicinal products with regard to vCJD riskEMA page still shows the October 2004 text as the current effective version, last updated 21 October 2004.
  43. OrganizationsCJD Care IndiaListed as a full member association in the CJDISA directory.
  44. OrganizationsCJD Support New ZealandListed as a CJDISA member association in the alliance directory (page undated, retrieved this month).
  45. OrganizationsSelbsthilfegruppe Prionen-Krankheiten OesterreichOnline relatives meeting on 16 October, with further dates in November and December.

September 2026

  1. FundingCJD Foundation research grants and fellowships programDeadline for invitations to submit full applications.
  2. FundingFDA rare neurodegenerative disease grants programFinal fiscal year end of the Act's 100 million USD annual authorization (FY2022 to FY2026).
  3. OrganizationsCJD FoundationSelected letter-of-intent applicants notified.
  4. OrganizationsLaboratorio Central de VeterinariaBOE publishes Real Decreto 682/2026, Orden PJC/1015/2026 and Orden APA/1016/2026.
  5. OrganizationsRobert Koch InstituteRKI unit page lists Group 3, Prions and Prionoids, under Achim Thomzig.
  6. RulesGenetic Non-Discrimination Act of CanadaConsolidated text current to this date.
  7. RulesReal Decreto 21/2013BOE no. 241 publishes Real Decreto 682/2026 and Orden PJC/1015/2026.
  8. RulesReal Decreto 3454/2000BOE no. 241 publishes Real Decreto 682/2026 and Orden PJC/1015/2026.
  9. RulesAccelerating Access to Critical Therapies for ALS ActEnd of fiscal year 2026 authorization and Section 2 grant cutoff.
  10. TrialsPRiSMIRB-approved protocol and consent forms posted on the lab page (from file dates).
  11. OrganizationsCJD Support NetworkRelays CJDISA update on PrProfile enrolment completion.
  12. OrganizationsCJD International Support AllianceCJDISA posts Regeneron managed access policy and ALN-6457 trial registry information.
  13. OrganizationsAlnylam PharmaceuticalsALN-6457 trial record first posted.
  14. OrganizationsMRC Prion Unit at UCLStudy of an intervention for people at risk of inherited prion disease announced.
  15. TrialsBrief group Acceptance and Commitment Therapy for people at risk of inherited prion diseasePaper published online in Neurotherapeutics 23(6), e01079, open access.
  16. Treatment researchPreimplantation genetic testingDate of the current HFEA full approved PGT-M condition list file (contents not opened).
  17. RulesHFEADate of the current downloadable full approved PGT-M condition list.
  18. Treatment researchALN-6457Registry record first submitted.
  19. OrganizationsAlnylam PharmaceuticalsALN-6457 trial record first submitted by Regeneron.
  20. OrganizationsRegeneron PharmaceuticalsTrial first registered.
  21. TrialsALN-6457Record first submitted.
  22. OrganizationsAmprion Inc.SAAmplify-aSYN Plus released.
  23. OrganizationsDNA Labs IndiaCurrent terms of service take effect.
  24. RulesRegulationFirst version of the EU SoHO Platform released.
  25. TestsES-QuICReview in Frontiers in Neuroscience sets out the case for ES-QuIC and reports parallel evaluation against EP-QuIC.
  26. TrialsEmerging CWDFirst intracerebrally inoculated reindeer dies about 21 months after inoculation, with high prion levels in brainstem and lymphoid tissue.
  27. OrganizationsCJD International Support AllianceUK CJD Support Network family support meeting with CJDISA-funded places (year inferred from the 2026 funding notice).
  28. OrganizationsCJD Support NetworkAnnual family support meeting with CJDISA-funded places, announced 3 September 2026.
  29. OrganizationsParis Brain InstituteSorbonne Universite page updated, listing the Alzheimer and prion team.
  30. OrganizationsAll India Institute of Medical SciencesUnion Health Minister describes the institute as fully operational.
  31. TrialsBrief group Acceptance and Commitment Therapy for people at risk of inherited prion diseasePaper accepted by Neurotherapeutics (received 11 June 2026).
  32. OrganizationsEli Lilly and CompanyExpected closing date given in August (on or about); actual date not stated.
  33. OrganizationsThe Roslin InstituteTherapeutic strategies in prion disease review published by Roslin authors.
  34. OrganizationsAustralian National CJD RegistryCurrent CSF fee schedule takes effect.
  35. TestsIDEXX HerdChek CWD Ag TestAPHIS lists 33 CWD-approved laboratories by method (page modification date).
  36. TestsPRNP gene sequencingGenetic test requisition and consent forms updated on the center site.
  37. FundingInterreg POCTEFA REDPRIONPlanned end of the three NEURO-COOP actions.
  38. OrganizationsPrion Research CenterNeurobiology of Disease paper with Telling and Bartz on the kuru-protective G127V prion protein variant as a dominant-negative therapeutic strategy.
  39. OrganizationsIstituto Superiore di SanitaParkinsonism and Related Disorders registry study of rapidly progressive dementia with parkinsonism.
  40. OrganizationsLabcorp GeneticsLabcorp catalogue page for the prion test last updated (shown as 09/04/2026).
  41. OrganizationsPublic Health Agency of Canada and University of ManitobaReview from the NML group, now listed under the High Consequence Pathogens Division, argues for ES-QuIC in standard diagnostic workflows for sporadic and inherited prion disease.
  42. OrganizationsCentre for Prions and Protein Folding DiseasesCentre news on nanoparticles for Alzheimer disease led by Kar.
  43. OrganizationsUCSF Institute for Neurodegenerative DiseasesbioRxiv preprint from Ayers, Prusiner and colleagues on infectious low-twist alpha-synuclein filaments in Lewy bodies.
  44. OrganizationsUCSF Memory and Aging CenterCJD Foundation conference programme lists Geschwind.
  45. OrganizationsUniversidad de Zaragoza prion research group and Centro de Encefalopatias y Enfermedades Transmisibles EmergentesPlanned end of the NEURO-COOP actions.
  46. OrganizationsXuanwu HospitalRegistry record last updated (posted 3 September 2026).
  47. OrganizationsSelbsthilfegruppe Prionen-Krankheiten OesterreichThree-country conference planned at Europahaus Wien (13-15 September).
  48. TrialsEfavirenz for the Treatment of Creutzfeldt-Jakob DiseaseLast registry update posted 3 September 2026.

August 2026

  1. FundingAnthropic AI for Science programNews post states up to USD 50000 per project and any researcher eligible.
  2. FundingERA BSEUniversity of Edinburgh infectious diseases news article on the project is published; it mentions a BSE case in Dumfries and Galloway reported in August 2026.
  3. TestsBlood prion seed amplification assaysRoslin announces a 1.25 million euro programme to adapt PMCA and RT-QuIC for prion strain discrimination.
  4. OrganizationsThe Roslin InstituteEUPAHW funded BSE origins programme announced.
  5. FundingERA BSERoslin Institute blog post announcing the project is listed with this date.
  6. OrganizationsD-Gen LtdAccounts to 30 November 2025 filed; company remains active.
  7. RulesProtocole standard prionANSM PSP reference page last updated.
  8. OrganizationsAnimal and Plant Health AgencyClassical BSE confirmed in a cow in Dumfries and Galloway (APHA is the notification route in Scotland).
  9. OrganizationsCanadian Creutzfeldt-Jakob Disease Surveillance SystemHealth Infobase CJD dashboard updated with data to 7 August 2026.
  10. OrganizationsPublic Health Agency of Canada and University of ManitobaHealth Infobase CJD dashboard updated with data to 7 August 2026.
  11. TestsPlasma prion amplification test for variant CJDThe TransDiag laboratory publishes amplification work on tau, evidence the group remains active but that its recent output has moved away from blood prion detection.
  12. OrganizationsEtablissement Francais du SangTransDiag publishes tau amplification work.
  13. Treatment researchAAV zinc finger repressor of PRNPLilly selected as successful bidder.
  14. OrganizationsEli Lilly and CompanyLilly selected as successful bidder at USD 50 million cash.
  15. OrganizationsSangamo TherapeuticsAuction results announced.
  16. OrganizationsLabcorp GeneticsLabcorp launches a consumer initiated genetic health panel described as using Invitae assets (no PRNP).
  17. OrganizationsCISA-INIAJournal of General Virology paper from CISA on formic acid and formalin effects on sporadic and variant CJD infectivity in histological samples.
  18. OrganizationsIstituto Superiore di SanitaJ Neurol registry cohort of 599 sporadic CJD cases on sex differences.
  19. OrganizationsMassachusetts General HospitalOBSERVE registry record last updated, still recruiting.
  20. OrganizationsNational Prion Disease Pathology Surveillance CenterCSF requisition form updated.
  21. OrganizationsSciensanoSciensano CJD surveillance page shows a current version stamp, the latest sign of upkeep seen.

July 2026

  1. OrganizationsFrench national surveillance network for Creutzfeldt-Jakob disease and related diseasesAgency case table updated, with 2026 partial data.
  2. PapersDenouel A et al. 2023Sante publique France updates its yearly CJD case table.
  3. RulesHFEAPGT-M pages last reviewed.
  4. TestsNano-QuICJeong et al. published in npj Parkinsons Disease.
  5. OrganizationsFulgent GeneticsForm 10-Q for the second quarter of 2026 filed, with revenue of USD 85.4 million.
  6. OtherPRIONPrion 2026 Verona submitted to an industry event compliance registry.
  7. OrganizationsAll India Institute of Medical SciencesContractual Assistant Professor post in Neurology advertised.
  8. PapersNg M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disordersPublished online.
  9. Treatment researchAnti-PrP antibody PRN100Prion Alliance update lists only siRNA and antisense trials as active PrP-lowering programs.
  10. FundingCJD Foundation research grants and fellowships programLetters of intent due for 2026-27.
  11. OrganizationsCJD FoundationLetters of intent due (passed).
  12. OrganizationsPrion AllianceMid-year update: symptomatic PRiSM recruitment only.
  13. TrialsPRiSMPrion Alliance mid-year update: symptomatic recruitment only; high interest.
  14. OrganizationsAFIFF Associazione Familiari Insonnia Familiare Fatale ODVPress report of the 8,500 euro AFIFF donation to the Mario Negri and Treviso biobank.
  15. OrganizationsIstituto di Ricerche Farmacologiche Mario Negri IRCCSTreviso hospital joins the Mario Negri FFI biobank study.
  16. OrganizationsWeissman Hood Institute at Touro UniversityFrontiers in Veterinary Science paper from the institute on novel prion protein gene variants in wild Montana mule deer.
  17. Treatment researchAAV zinc finger repressor of PRNPSangamo presents ST-506 data at a CJD Foundation event (slides hosted by the Foundation).
  18. OrganizationsCJD FoundationHosts Sangamo ST-506 presentation.
  19. OrganizationsEli Lilly and CompanySangamo tells the CJD Foundation family conference that Lilly is the identified buyer and the program is expected to continue.
  20. OrganizationsSangamo TherapeuticsST-506 slides presented to families.
  21. OrganizationsAll India Institute of Medical SciencesMinisterial review: construction 87.4 percent complete, MRI and CT operational, 250 beds.
  22. OrganizationsCJD FoundationFamily Conference opens in Chicago (to 12 July).
  23. FundingMRC Proof of ConceptMRC Proof of Concept stage two opens, invitation only.
  24. OrganizationsAustrian Reference Centre for Human Prion DiseasesEEG study with ACNS 2021 criteria published online.
  25. OrganizationsNagasaki University Sato LaboratoryNotice that testing closes 7 to 17 August 2026.
  26. OrganizationsDNA Labs IndiaISO 9001:2015 certificate IN125044A first issued by LMS Certifications.
  27. OrganizationsUCSF Institute for Neurodegenerative DiseasesJason Gestwicki becomes interim director while a national search runs.
  28. OrganizationsMedicines and Healthcare products Regulatory AgencyMHRA approves UK plasma for five further products on 9 July.
  29. OrganizationsMODAG GmbHMODAG site announces PD DETECT as CE (IVDR) marked; exact certification date unknown.
  30. OrganizationsNational Center of Neurology and PsychiatryConsent document v1.7 and FY2026 member list published on the surveillance portal.
  31. PapersNg M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disordersIssue date, volume 55 issue 7.
  32. OrganizationsJACOPSurveillance group consent explanation document updated to version 1.7 (24 July).
  33. TrialsNational Prion Monitoring CohortAt-risk information sheet version 4.3 current.

June 2026

  1. TestsMayo RT-QuIC Prion CSFNPDPSC surveillance data updated, showing 56 Mayo-tested positives for 2026 to date.
  2. OrganizationsMayo Clinic LaboratoriesNPDPSC surveillance page updated, counting Mayo-tested RT-QuIC positives for 2024 to 2026.
  3. OrganizationsUCSF Institute for Neurodegenerative DiseasesPrusiner steps down as IND director after nearly three decades and remains on the faculty.
  4. OrganizationsMinnesota Center for Prion Research and OutreachState appropriation for the centre ends.
  5. Treatment researchPMSANeurobiology of Disease paper on the G127V dominant-negative strategy, with CIC bioGUNE and Atlas co-authors.
  6. OrganizationsAtlas Molecular Pharma S.L.G127V dominant-negative paper published online in Neurobiology of Disease.
  7. OrganizationsCIBERINFECG127V dominant-negative paper published in Neurobiology of Disease with CIBERINFEC affiliations.
  8. TrialsBrief group Acceptance and Commitment Therapy for people at risk of inherited prion diseasePreprint posted on medRxiv.
  9. Treatment researchPreimplantation genetic testingIsraeli practice framework published, describing direct and exclusion PGT and public funding.
  10. Treatment researchAAV zinc finger repressor of PRNPSangamo files Chapter 11 and signs the asset sale to Lilly.
  11. FundingCJD Foundation research grants and fellowships program2026-27 call published on a third-party listing.
  12. OrganizationsEli Lilly and CompanyAsset sale agreement with Sangamo signed; Sangamo files Chapter 11.
  13. OrganizationsHospices Civils de LyonPreprint on strain specific clustering of sporadic CJD in France posted.
  14. OrganizationsSangamo TherapeuticsChapter 11 filed and asset sales signed.
  15. PapersDenouel A et al. 2023Same team posts a preprint on strain specific spatial clustering of French sporadic CJD for 1992 to 2016.
  16. PapersShir D et al. A practice framework for genetic testing in asymptomatic relatives of patients with Creutzfeldt-Jakob diseasePublished online (Europe PMC lists the issue date as June 2026).
  17. OrganizationsCanadian Creutzfeldt-Jakob Disease Surveillance SystemMedia report says the long-serving CJDSS head had retired from PHAC a few months earlier.
  18. OrganizationsDulbecco Telethon Laboratory of Prions and AmyloidsReview on prion drug discovery with Santiago de Compostela published.
  19. OrganizationsCIMUS Biomedical Research InstituteReview on prion drug discovery with Trento published.
  20. OrganizationsIstituto Italiano di TecnologiaThe Expert Opinion on Drug Discovery review on prion misfolding and therapeutics is published online with an IIT Genoa co-author (print July 2026).
  21. OrganizationsHospital Universitario Fundacion Alcorcon neuropathology and brain bankEFE reports about 2,500 brains held and the national CJD reference role.
  22. OrganizationsD-Gen LtdPNAS paper from the MRC Prion Unit reports D-Gen as supplier of ICSM18 and ICSM35.
  23. OrganizationsANSMANSM announces the first product compliant with PSP v2018.
  24. RulesProtocole standard prionANSM announces the first product on the PSP v2018 list.
  25. PapersNg M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disordersManuscript accepted.
  26. OrganizationsProtein macro-assembly and prion diseases teamUnit page on the University of Versailles Saint-Quentin site last updated, naming the six teams and the director.
  27. OrganizationsUniversidad de Zaragoza prion research group and Centro de Encefalopatias y Enfermedades Transmisibles EmergentesNEURO-COOP funded paper on preclinical scrapie biomarkers.
  28. Treatment researchZinc tetracationic porphyrin anti-prion compoundCell-based prion protein tagging method published from the same laboratory, with no new porphyrin data.
  29. OrganizationsCanadian Food Inspection AgencyRabies testing moves from Lethbridge to Ottawa.
  30. OrganizationsFondazione TelethonMario Negri prion protein tracking paper published with Telethon GGP15225.
  31. OrganizationsHCSPUpdated opinion on prion and propagon exposure accidents; online 13 August 2026.
  32. OrganizationsParis Brain InstituteInserm CSF prion detection engineer post in the team falls vacant.
  33. RulesRegulationECDC hepatitis B and C guideline listed.
  34. RulesProtocole standard prionLater HCSP opinion replaces the 2023 opinion; put online 13 August 2026. Its summary covers only exposure accidents and does not mention the PSP or the 2026 date (full text not read).
  35. Treatment researchSplice-switching small molecules and cryptic exon manipulation to lower PrPLiu et al. post the CP3 splice-switching preprint on bioRxiv; later indexed in PubMed and PMC.
  36. OrganizationsPrion Research CenterPLoS Pathogens paper from the Telling group on convergent chronic wasting disease strain properties from brain and peripheral tissue conformers in gene-targeted mice, and a Scientific Reports paper from the Mathiason group on prions in the blood of healthy-looking wild white-tailed deer.
  37. OrganizationsPublic Health Agency of Canada and University of ManitobaPaper with the University of Alberta prion centre on the variable MV1 subtype of sporadic CJD.
  38. OrganizationsSheba Medical CenterIsraeli presymptomatic genetic testing framework published, with Sheba genetics authors.
  39. OrganizationsCentre for Prions and Protein Folding DiseasesPaper on the sporadic CJD MV1 subtype with the Public Health Agency of Canada and the NPDPSC.
  40. PapersSchwartz M et al. Genetic Testing in Prion Disease: Psychological Consequences of the Decisions to Know or Not to KnowCited by the Israeli practice framework for testing asymptomatic relatives and by the UK ACT intervention preprint.

May 2026

  1. OrganizationsAll India Institute of Medical SciencesPrion Disorders Update: An Indian Perspective published online from the department.
  2. OrganizationsCanadian Food Inspection AgencyThe macaque CWD study is published in Science Advances.
  3. OrganizationsNational CJD NHS Nursing ServiceEdinburgh CJD services page, dated this day, still lists the NHS Lothian national nursing service.
  4. OrganizationsNational Prion ClinicEdinburgh services page routes advice to the clinic.
  5. OrganizationsRobert Koch InstituteScience Advances macaque CWD paper with three unit authors.
  6. OrganizationsCalgary Prion Research UnitMacaque CWD transmission study published in Science Advances.
  7. OrganizationsNational CJD Research and Surveillance UnitEdinburgh services page published without a research unit.
  8. TrialsAPRI funded CWD transmission study in cynomolgus macaquesPaper published in Science Advances (PMID 42202024).
  9. Treatment researchGate Bioscience oral small-molecule Molecular GatePLOS Pathogens paper on PrP turnover, with Gate support, appears.
  10. OrganizationsWeissman Hood Institute at Touro UniversityPLoS Pathogens paper with the Broad group and Ionis on PrP turnover in vivo, with mouse studies run at the Weissman Hood Institute.
  11. OrganizationsTouro UniversityPLoS Pathogens PrP turnover paper with mouse work at the Touro affiliated institute, part funded by the COBRE award.
  12. TrialsEmerging CWDAnnual project meeting in Madrid discusses the unclear excreta and blood test results.
  13. FundingHuman Prion Disease International NetworkCOST Committee of Senior Officials approves the Action (CSO approval date on the Action page).
  14. RulesFDA Type C Surrogate Endpoint meetingFDA public workshop on novel surrogate endpoints in rare disease.
  15. Treatment researchPrP-lowering divalent siRNAPRiSM registry start date.
  16. OrganizationsMayo Clinic LaboratoriesPRiSM trial start date, actual.
  17. OrganizationsNIH NeuroNEXTPRiSM registry start date.
  18. TrialsCLIME-CJD multimodal retrospective CJD cohortRegistry record first posted; first submitted 2026-05-06.
  19. TrialsPRiSMRegistry start date.
  20. FundingFDA rare neurodegenerative disease grants programBoth Grants.gov forecasts last updated, still without dates.
  21. Treatment researchDownstream glial and neuroinflammation targetsZurich news item on a Nature Communications paper on a Gpnmb-positive microglial state in prion and other models.
  22. Treatment researchGPNMB as a therapeutic targetNature Communications publishes the mouse paper.
  23. OrganizationsInstitute of NeuropathologyNature Communications paper.
  24. OrganizationsCanadian Food Inspection AgencyCFIA reference laboratory list confirms Lethbridge as the BSE reference laboratory.
  25. OrganizationsCanadian Food Inspection AgencyCFIA reference laboratory list confirms Ottawa for CWD and scrapie and Lethbridge for BSE.
  26. TestsES-QuICPrint issue, Annals of Neurology 99(5):1303-1314.
  27. OrganizationsAlnylam PharmaceuticalsInitial Research Term of the collaboration expires.
  28. OrganizationsMassachusetts General HospitalPRiSM starts with MGH among five recruiting sites.
  29. OrganizationsNational Society of Genetic CounselorsInternational organisation directory updated.
  30. OrganizationsInstitute of Neuropathologymacaque CWD transmission paper published online with a Saarland affiliation.
  31. OrganizationsSISSA TriesteMulti-target prion drug discovery review published online.
  32. OrganizationsWorld Organisation for Animal HealthBSE status list adopted as Resolution No. 23 at the 93rd General Session.
  33. OrganizationsZenkoku Prion-byo Kanja-Kazoku-kai Sazanka no KaiBooth at the Japanese Society of Neurology annual meeting, Yokohama (22 to 23 May).

April 2026

  1. OrganizationsCIMUS Biomedical Research InstitutePNAS paper on PrPC unfolding published.
  2. OrganizationsCalgary Prion Research UnitPaper on reduced prion shedding after CWD vaccination published.
  3. OrganizationsUMass Chan Medical SchoolDivalent siRNA for prion disease published.
  4. PapersShir D et al. A practice framework for genetic testing in asymptomatic relatives of patients with Creutzfeldt-Jakob diseaseRevised version received.
  5. TrialsPRiSMMouse study published online (Nucleic Acids Research).
  6. TrialsAPRI funded CWD transmission study in cynomolgus macaquesManuscript accepted.
  7. Treatment researchPrP-lowering divalent siRNAPRiSM launch announced.
  8. TestsCSF PrP quantificationPRiSM statement lists CSF PrP lowering as an aim of the single dose.
  9. OrganizationsBroad Institute: Vallabh/Minikel Prion Therapeutic Science programPRiSM trial launched.
  10. OrganizationsCJD FoundationHosts the PRiSM community statement.
  11. OrganizationsNIH NeuroNEXTTrial launch announced.
  12. OrganizationsPrion AlliancePosts the PRiSM launch statement.
  13. TrialsOBSERVERegistry record last updated.
  14. TrialsPRiSMTrial launch announced; sponsor community statement.
  15. FundingFDA rare neurodegenerative disease grants programFDA funding opportunities page last reviewed, showing no open RNDD call.
  16. OrganizationsFDA Office of Orphan Products DevelopmentFDA funding opportunities page current as of this date.
  17. OrganizationsMRC Prion Unit at UCLOpen Day for patients, relatives and at-risk family members.
  18. OrganizationsNational Prion ClinicOpen Day for patients and at-risk relatives.
  19. PapersNg M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disordersManuscript received by the journal.
  20. OrganizationsHospices Civils de LyonHCL page for prescribers, linking the biobook catalogue, last updated.
  21. FundingMRC Proof of ConceptRenamed panel membership takes effect.
  22. OrganizationsCIBERNEDFerrer coauthors two new VPSPr case reports with CIC bioGUNE and Vienna.
  23. Treatment researchCYP46A1 activationXuanwu Hospital phase 3 efavirenz trial starts (14 April).
  24. Treatment researchDownstream glial and neuroinflammation targetsFrontiers review (final search 7 April 2026) says glial modulation is underdeveloped and combinations may be needed.
  25. Treatment researchPrP-lowering divalent siRNAPaper published in Nucleic Acids Research.
  26. OrganizationsAFIFF Associazione Familiari Insonnia Familiare Fatale ODVBiobank project with Mario Negri announced on the official site.
  27. OrganizationsFondazione IRCCS Istituto Neurologico Carlo BestaCJD case report from the Besta laboratory medicine unit.
  28. OrganizationsFundacion Espanola de Enfermedades PrionicasEverest base camp trek with AFIFF.
  29. OrganizationsIstituto Superiore di SanitaAnnals of Neurology study of the cortical sporadic CJD subtype with Bologna.
  30. OrganizationsIstituto di Ricerche Farmacologiche Mario Negri IRCCSBiobank project with AFIFF announced.
  31. OrganizationsXuanwu HospitalTrial start recorded as 14 April 2026.
  32. PapersAli et al. 2025Phase 3 efavirenz trial in sporadic and genetic CJD starts at Xuanwu Hospital, Beijing.
  33. TrialsEfavirenz for the Treatment of Creutzfeldt-Jakob DiseaseTrial start recorded as 14 April 2026 (actual).

March 2026

  1. OrganizationsNational CJD Research and Surveillance UnitFunding for the diagnostic advisory service ends.
  2. OrganizationsAustrian Reference Centre for Human Prion DiseasesMinistry list of national reference centres confirms OERPE as the CJD reference centre.
  3. OrganizationsCJD Support NetworkPublishes notice that Edinburgh diagnostic advisory service funding ends on 31 March 2026.
  4. OrganizationsCanadian Creutzfeldt-Jakob Disease Surveillance SystemCJDSS program pages and factsheet last updated.
  5. OrganizationsPublic Health Agency of Canada and University of ManitobaPHAC CJDSS program page and factsheet last updated.
  6. RulesUK Code on Genetic Testing and InsuranceCode updated on the Appendix I process.
  7. Treatment researchPrP-lowering antisense oligonucleotideIonis announces regimen 3 and re-opens the trial.
  8. OrganizationsFulgent GeneticsBako Diagnostics assets and StrataDx acquisition completed for about USD 56.9 million in cash.
  9. OrganizationsIonis PharmaceuticalsIonis announces regimen 3 and reopens PrProfile.
  10. TrialsPrProfileIonis re-opens the trial with a third dosing regimen (three sites active).
  11. FundingAnthropic AI for Science programHelp article last updated, stating USD 20000 over 6 months.
  12. OrganizationsCentre for Prions and Protein Folding DiseasesUniversity news names Wille as director and reports his alpha-synuclein vaccine results in mice.
  13. OrganizationsAssociation of British InsurersSecond 3-year review gives membership as more than 300 firms.
  14. RulesUK Code on Genetic Testing and InsuranceSecond 3-year review published.
  15. OrganizationsISCIII Centro Nacional de EpidemiologiaVariant CJD surveillance paper for 1993 to 2021 published.
  16. OrganizationsMayo Clinic LaboratoriesPRiSM trial first posted on ClinicalTrials.gov; Mayo Rochester later listed as a recruiting site.
  17. OrganizationsBioaraba Health Research InstituteLetter on transmission ratio distortion methods published.
  18. Treatment researchNPC-31Pipeline table shows NPC-31 phase I/II in preparation.
  19. OrganizationsAFIFF Associazione Familiari Insonnia Familiare Fatale ODVEverest Base Camp awareness trek promoting the PRION 2026 meeting.
  20. OrganizationsNobelpharma Co.Pipeline table shows NPC-31 in preparation for phase I/II.
  21. OrganizationsNorwegian Food Safety AuthorityTSE regulation amended on 23 March 2026.
  22. OrganizationsThe Roslin InstituteCJD Foundation project starts, running to February 2028.
  23. OrganizationsXuanwu HospitalEfavirenz CJD trial registered (submitted 6 March, posted 19 March).
  24. OrganizationsZenkoku Prion-byo Kanja-Kazoku-kai Sazanka no KaiJoins RD Network (14 March).
  25. TrialsEfavirenz for the Treatment of Creutzfeldt-Jakob DiseaseTrial first submitted (6 March) and posted (19 March) on ClinicalTrials.gov.

February 2026

  1. OrganizationsFulgent GeneticsFull year 2025 results reported: revenue USD 322.7 million.
  2. TrialsPRiSMPartial clinical hold removal letter (from file name).
  3. OrganizationsAssociazione Italiana Encefalopatie da PrioniISS registry links page, still listing AIEnP, last modified.
  4. OrganizationsISCIII Centro Nacional de MicrobiologiaENAC scope revision 20 of accreditation 175/LE1213.
  5. OrganizationsIstituto Superiore di SanitaRegistry home, services, links and donation pages last modified.
  6. TestsCSF RT-QuICDeath of RT-QuIC pioneer Byron Caughey.
  7. OrganizationsNIAID Rocky Mountain LaboratoriesSection chief Byron Caughey dies.
  8. OrganizationsIstituto di Ricerche Farmacologiche Mario Negri IRCCSD178N RML prion strain paper published in Acta Neuropathologica.
  9. OrganizationsInstitute of NeuropathologyActa Neuropathologica paper with Altmeppen on D178N PrP transgenic mice and RML strain properties, with NIAID Hamilton and CIC bioGUNE co-authors.
  10. OrganizationsCIMUS Biomedical Research InstituteL108I mouse paper with CIC bioGUNE published.
  11. OrganizationsNEIKERBrain Pathology paper on the L108I mouse prion protein model, NEIKER affiliation still present.
  12. OrganizationsTransgenic FacilityBrain Pathology paper reporting the two new mouse PrP L108I lines.
  13. TestsNano-QuICOptimised plasma Nano-QuIC preprint by Jeong et al. posted.
  14. OrganizationsUniversidad de Zaragoza prion research group and Centro de Encefalopatias y Enfermedades Transmisibles EmergentesAmendment of the centre rules, per search excerpts.
  15. OrganizationsAssociation of British InsurersABI 2026 to 2028 strategy reported.
  16. OrganizationsHCSPCall for members for the 2026 to 2030 term.
  17. RulesOrphan Drug ActPub. L. 119-75 changes exclusivity scope to same approved use or indication.
  18. OrganizationsFrench national surveillance network for Creutzfeldt-Jakob disease and related diseasesAgency CJD pages last updated.
  19. Treatment researchDominant-negative protein-based gene therapyPreprint on G127V dominant-negative effect in cell culture co-authored by Castilla.
  20. TestsBlood markersLancet Neurology biomarker review.
  21. TestsTear fluid RT-QuICLancet Neurology review of prion biomarkers.
  22. OrganizationsBio-Rad LaboratoriesFY2025 Form 10-K filed, listing about 7,450 employees at end 2025 (filing date taken from the accession number, not read).
  23. OrganizationsCIC bioGUNE Prion Research LabG127V dominant-negative preprint.
  24. OrganizationsEU reference laboratory for TSEsVersion 2 of the guidelines on changes to approved rapid test protocols.
  25. OrganizationsIstituto Superiore di SanitaActa Neuropathologica paper with Mario Negri on D178N and RML prion strains.
  26. PapersMead S et al. 2026Article appears in Lancet Neurology 25(2), pages 181-194 (Europe PMC first publication date 1 February).
  27. OrganizationsZenkoku Prion-byo Kanja-Kazoku-kai Sazanka no KaiTalk at national prion disease officials meeting (6 February); Japan Rare Disease Consortium meeting (27 February).

January 2026

  1. Treatment researchDominant-negative protein-based gene therapyBrain Pathology paper on AAV-delivered PrP variants in knockout mice listed on the lab profile (not opened).
  2. OrganizationsInstitute of NeuropathologyActa Neuropathologica Communications paper from the institute on presymptomatic mGluR5 inhibition in a prion mouse model.
  3. FundingCJD Foundation research grants and fellowships programTen grants and fellowships announced for the 2025-26 cycle.
  4. OrganizationsCJD FoundationTen grants and fellowships announced.
  5. OrganizationsThe Roslin InstituteCJD Foundation announces the Mabbott stem cell gene therapy grant; the same day the university announces John Hammond as next director.
  6. OrganizationsNagasaki University Sato LaboratoryNagasaki University news post on the hair root and scalp test.
  7. TestsEP-QuICES-QuIC paper published, using EP-QuIC as the 87.1 percent benchmark.
  8. TestsES-QuICES-QuIC paper published online in Annals of Neurology.
  9. PapersNg M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disordersPubMed literature search run.
  10. TestsTear fluid RT-QuICE200K substrate paper published.
  11. OrganizationsFundacion Espanola de Enfermedades PrionicasGoettingen tear fluid RT-QuIC paper published, with samples collected in collaboration with the foundation.
  12. OrganizationsUMass Chan Medical SchoolPLN-R14del siRNA license to a nonprofit.
  13. PapersZerr I et al. 2009CDC clinical overview page that lists the paper as a source is dated.
  14. OrganizationsIRTA-CRESAActa Neuropathologica Communications paper on spontaneous atypical prion disease in bank vole PrP I109 mice, acknowledging NEURO-COOP.
  15. OrganizationsTransgenic FacilityActa Neuropathologica Communications paper on spontaneous atypical prion disease in TgVole(I109)4x mice, with 25 institutions on the author list.
  16. FundingBIOEFBIOEF approves its 2025 to 2028 Basque language plan; EiTB Maratoia 2025 is listed as dedicated to ageing research.
  17. PapersShir D et al. A practice framework for genetic testing in asymptomatic relatives of patients with Creutzfeldt-Jakob diseaseManuscript received by the European Journal of Neurology.
  18. OrganizationsPrion and Public Health OfficeCDC CWD page last dated 21 January, restating no reported human cases and ongoing hunter surveys.
  19. OrganizationsPrion Research CenterJournal of Infectious Diseases paper on refined gene-targeted mice that reproduce natural chronic wasting disease features with rapid onset.
  20. OrganizationsHungarian Reference Center for Human Prion DiseasesSemmelweis publishes the current request form naming Tibor Kovacs as head.
  21. OrganizationsIonis PharmaceuticalsHolly Kordasiewicz scheduled to become chief development officer.
  22. OrganizationsJoint UK Blood Transfusion and Tissue Transplantation Services Professional Advisory CommitteeJPAC vCJD position statement updated (contents not read).
  23. OrganizationsLudwig Institute for Cancer ResearchFrontiers review of Brazilian surveillance finds underreporting and no named reference laboratory.
  24. OrganizationsPublic Health Agency of Canada and University of ManitobaAnnals of Neurology paper with the US NPDPSC reports ES-QuIC detects sporadic and inherited prion disease with 96.6 percent sensitivity.
  25. PapersMead S et al. 2026Crossref created the DOI record for the article (22 January); this is a registration date, not necessarily an online publication date.
  26. PapersOrru CD et al. 2018Tear fluid RT-QuIC with a human E200K substrate published by the Goettingen reference centre.

December 2025

  1. OrganizationsIDIBELL and Bellvitge University Hospital neuropathology and brain bankVPSPr two-case report published online with a Bellvitge-IDIBELL coauthor (print April 2026).
  2. OrganizationsAustrian Reference Centre for Human Prion DiseasesTwo new VPSPr cases with Vienna reference centre authors published online.
  3. OrganizationsFulgent GeneticsAgreement to acquire Bako Diagnostics and StrataDx announced.
  4. OrganizationsCanadian Creutzfeldt-Jakob Disease Surveillance SystemNational CJD incidence paper published with Ottawa co-authors under the Infectious Diseases and Vaccination Programs Branch, not the CJDSS.
  5. OrganizationsInstitute of NeuropathologyBrain Pathology paper with the Goettingen reference center on tau seeding in rapidly progressive Alzheimer disease, published online.
  6. OrganizationsEtablissement Francais du SangSante publique France page, updated, still lists the UK stay exclusion.
  7. FundingFDA Drug Development Tool qualification programFDA announces qualification of AIM-NASH for MASH trials.
  8. Treatment researchPreimplantation genetic testingTransmission ratio distortion study for D178N and E200K families published, raising questions for PGD programmes.
  9. OrganizationsBlueprint GeneticsJuhana Rauramo announced as Vice President and General Manager.
  10. Treatment researchPMSAActa Neuropathologica Communications paper reports that sulfated glycan cofactors facilitate strain emergence without determining strain properties.
  11. FundingInterreg POCTEFA REDPRIONBioaraba genetic prion transmission paper published with NEURO-COOP funding.
  12. FundingBIOEFGenetic prion transmission study acknowledging grant BIO22/ALZ/012 published.
  13. OrganizationsCIBERNEDDel Rio and Gavin review of PrPC and tau published, part funded by CIBERNED.
  14. OrganizationsFundacion Espanola de Enfermedades PrionicasGenetic prion transmission paper published, with recruitment partly through the foundation.
  15. OrganizationsBioaraba Health Research InstituteGenetic prion transmission study published in Eur J Neurol.
  16. Treatment researchDominant-negative protein-based gene therapyFinal grant report: mouse survival extensions of 35 to over 100 percent reported.
  17. FundingCZI Neurodegeneration Challenge NetworkMinnesota record shows the prion pilot ending (31 December), status finished.
  18. OrganizationsCIBERINFECTwo variably protease-sensitive prionopathy cases and the paper on transmission risk in genetic prion disease published with CIBERINFEC affiliations.
  19. OrganizationsCIC bioGUNE Prion Research LabFinal grant report posted.
  20. OrganizationsPrion Research CenterPNAS paper on coexpression of prion protein from different species in mice and its effect on strain selection and host range.
  21. OrganizationsNeuropathology and Molecular Biology of Transmissible Spongiform Encephalopathies Referral CenterFLENI conference abstract on 64 CJD patients from 2006 to 2021.
  22. OrganizationsJoint UK Blood Transfusion and Tissue Transplantation Services Professional Advisory CommitteePosition statement on the relationship between JPAC and SaBTO posted (contents not read).
  23. OrganizationsPublic Health Agency of Canada and University of ManitobaPaper shows Canadian CJD incidence stayed stable through the COVID-19 pandemic, using national EP-QuIC data from 2016 to 2025.
  24. RulesAdvisory Committee on the Safety of BloodBy the 60th meeting, CJD Review Group report on donor selection approved and Amyloid Beta Pathologies Working Group set up.

November 2025

  1. OrganizationsBlueprint GeneticsDementia Panel page, which includes PRNP, last updated.
  2. OrganizationsNagasaki University Sato LaboratoryAsian Pacific Prion Symposium opens in a two-day programme hosted by the department (to 28 November).
  3. OrganizationsDulbecco Telethon Laboratory of Prions and AmyloidsCo-authored anti-prion compound screen published in Scientific Reports.
  4. OrganizationsNagasaki University Sato LaboratoryHair root and scalp RT-QuIC study published in Scientific Reports.
  5. FundingMRC Proof of ConceptDPFS stage one opens; closed 2025-12-22.
  6. Treatment researchGate Bioscience oral small-molecule Molecular GateGate announces a USD 65 million Series B.
  7. OrganizationsEuropean Food Safety Authority2024 EU TSE surveillance summary published.
  8. OrganizationsGate BioscienceSeries B announced.
  9. RulesRegulationEFSA publishes the 2024 EU TSE surveillance summary.
  10. OrganizationsCJD International Support AllianceCJDISA international CJD Awareness Day campaign, Globally united for prion disease, linked from the NeuroPrion site.
  11. Treatment researchAnti-PrP antibody PRN100Cure CJD Campaign launches a 9 million pound appeal for a Phase 2 trial.
  12. OtherPRIONPrion 2025 opens in Buzios, Brazil.
  13. OrganizationsNeuroPrionPrion 2025 scheduled to open in Buzios, Brazil.
  14. OrganizationsDanish Reference Center for Prion DiseasesMicroglia profiling study across CJD and Alzheimer disease published.
  15. OrganizationsISCIII Centro Nacional de EpidemiologiaRegistry abstract at the Spanish Society of Neurology meeting warns of falling notification and diagnosis, 2,618 cases to March 2025.
  16. PapersBiacabe AGEFSA reports 3 atypical BSE cases among 980,624 cattle tested in 2024.
  17. FundingCure CJD CampaignLaunch release dated 6 November for the 9 million pound Phase II appeal, ahead of International Prion Disease Awareness Day on 12 November.
  18. OrganizationsCJD Support New ZealandSite banner promotes International CJD Awareness Day on 12 November 2025, run by CJDISA.
  19. OrganizationsFundacion de Enfermedades NeurodegenerativasPRION 2025 held 3 to 7 November in Armacao dos Buzios, Brazil, named on FEN's international page.

Last checked 30 October 2026