For clinicians and researchers
Every source, and how each one was obtained
Most of what is repeated about SSPE treatment rests on abstracts rather than on papers anybody has read. This is the full source list behind our SSPE research, and every entry says plainly which of the two it is.
Draft · awaiting Dr. Sana's medical review- 85documents
- 51read in full
- 22abstract or secondary only
- 0could not be obtained
Why this page exists
A treatment claim is only as good as the document behind it. Working through this literature we found figures that are quoted widely but trace back to an abstract, to a review citing a review, or to nothing retrievable at all — and a few that trace back to nothing we could find. So every source here carries a tag for how it was actually obtained, and anything resting on an abstract only tag should not be quoted without getting the document first.
- full text the primary document was retrieved and read
- abstract only only the abstract or a bibliographic record was obtainable
- record a registry, grant or regulatory entry
- secondary known through a review or report citing it
- figure values read off a published figure
- not retrieved could not be obtained at all
Where a document could not be obtained from its original publisher but turned up elsewhere — a repository, an archive, a journal's own PDF — the working location is named underneath it.
No sources match that filter.
Direction 1 — brain-penetrant fusion blocker10
PLoS ONE 2016, DOI 10.1371/journal.pone.0162823, PMC5017735 (fusion-inhibitory peptide in an authentic SSPE mouse model)full text
0% to 67% survival with peptide M2EK, n=6 per group, intracranial Yamagata-1 SSPE strain, nude mice; The fusion-peptide survival benefit in authentic SSPE virus required direct intracranial delivery — local-only data
pmc.ncbi.nlm.nih.gov/articles/PMC5017735Welsch JC, et al. J Virol 2013 (Dec), PMC3838268 (Columbia/Weill Cornell brain-penetrant fusion inhibitors)full text
Brain 57 nM four hours after 6 mg/kg subcutaneous HRC4 — the 'about 57 nM' figure; Columbia's own paper: activity against SSPE strains with enhanced-fusion F mutations 'remains to be determined'
pmc.ncbi.nlm.nih.gov/articles/PMC3838268mBio 2021, PMC8263006 (HRC4 and 3G against L454W hyperfusogenic F in brain organoids)full text
100 nM left only isolated single infected cells; 10 nM partial; receptor-free brain cultures, peptide added post-infection; The decisive 3G-versus-HRC4 class contrast rests on this paper's figure, not a matched titration
pmc.ncbi.nlm.nih.gov/articles/PMC8263006Nat Commun 2022;13:6439, PMC9616412full text
FIP-resistant V459/N462 variants stayed HRC4-susceptible; eight passages at 1 microM produced no resistance mutations
pmc.ncbi.nlm.nih.gov/articles/PMC9616412obtained at europepmc.org/articles/PMC9616412Angius F, et al., J Virol 2019;93(4):e01700-18, PMC6364028full text
Authentic SSPE-strain paper tests no fusion-inhibitor peptide — the untested gap this direction names
pmc.ncbi.nlm.nih.gov/articles/PMC6364028US20230014151A1 (Columbia University / Weill Cornell; Porotto, Moscona, Alabi), US patent application publicationfull text
Columbia and Weill Cornell hold the chemically modified HRC4 lipopeptide platform; SSPE named, not tested; Patent does mention SSPE; never names the polymerase drug; no fusion-plus-polymerase combination index
patents.google.com/patent/US20230014151A1/enNIH R01NS105699, 'Development of therapeutic fusion inhibitor peptides for Measles encephalitis', PI Porotto, Columbia; grant record 9973101record
Fusion-inhibitor peptide grant ran to 30 June 2023 and ended on schedule
api.ai-analytics.org/grant/nih/9973101.mdPandemic PACT grant P40442, 'Design of fusion inhibitors to block measles host-to-host infection'record
The group's later funded work targets measles host-to-host transmission, not SSPE
www.pandemicpact.org/grants/P40442Ikegame S, Hashiguchi T, Hung CT, Dobrindt K, Brennand KJ, Takeda M, Lee B, PNAS 2021, PMC8106313full text
At least 15 further hyperfusogenic SSPE-phenotype F mutations exist, so one mutant may not generalise
pmc.ncbi.nlm.nih.gov/articles/PMC8106313obtained at web.archive.org/web/2021id_/https://www.pnas.org/content/pnas/118/18/e2026027118.full.pdfHashiguchi T, et al. “Structures of the prefusion form of measles virus fusion protein in complex with inhibitors.” PNAS 2018, PMC5877970 (PMID 29463726)full text
AS-48 and FIP inhibited all hyperfusogenic F proteins except N462K; N462 is the inhibitor-binding residue, so escape tracks the binding site
pmc.ncbi.nlm.nih.gov/articles/PMC5877970
Direction 2 — favipiravir to a measured spinal-fluid level8
Paal M, et al. 2025, favipiravir serum/CSF therapeutic drug monitoring in BoDV-1 encephalitis, PMC12495633full text
Six CSF samples in the 23 kg child ranged 17.1 to 53.7 µg/mL favipiravir; Fixed "non-weight adjusted" influenza dose 1200 mg/d; the adult never reached IC50
pmc.ncbi.nlm.nih.gov/articles/PMC12495633Hashimoto K, et al. 2021, Jpn J Infect Dis 74(2), Table 1 and Methods, J-STAGE full-text PDFfull text
Favipiravir EC50 6.1 µg/mL versus SSPE Yamagata-1 and 17.1 µg/mL versus Edmonston; Same table: ribavirin 42.0 versus 9.3 µg/mL, a larger 4.5-fold ratio
pubmed.ncbi.nlm.nih.gov/32863356Hosoya M, et al. 2004, Antimicrob Agents Chemother 48(12):4631-4635, Introduction, PMC529186full text
CSF-targeted intraventricular ribavirin, 50-200 µg/mL target, frequency set per patient half-life; Intravenous ribavirin CSF 7.5-17.4 µg/mL insufficient; higher CSF concentration judged necessary
pmc.ncbi.nlm.nih.gov/articles/PMC529186Pharmaceuticals 2023;16(4):524, [18F]favipiravir PET in CD-1 mice and rhesus monkey, PMC10146102full text
Low brain uptake, 0.6 SUV mice and 0.61 rhesus; P-gp blockade changed nothing; Neuroinflamed 5xFAD mice gave 0.52 SUVpeak, no rise versus wild-type
pmc.ncbi.nlm.nih.gov/articles/PMC10146102PMDA Report on the Deliberation Results, favipiravir (Avigan), 2014, juvenile animal toxicity studiesfull text
Cynomolgus monkey brain-to-plasma favipiravir ratio of 0.09 at 0.5 hours; Juvenile rat and dog testis histopathology, skeletal muscle atrophy, abnormal gait
www.pmda.go.jp/files/000210319.pdfNaesens L, et al., Role of human hypoxanthine guanine phosphoribosyltransferase in activation of T-705 (favipiravir)abstract only
Favipiravir requires HGPRT ribosylation to activate and is a poor substrate
www.researchgate.net/publication/254266435_Role_of_Human_Hypoxanthine_Guanine_Phosphoribosyltransferase_in_Activation_of_the_Antiviral_Agent_T-705_FavipiravirWHO ICTRP, "subacute sclerosing panencephalitis", 7 records for 7 trials, queried 8 Nov 2026record
No favipiravir study in SSPE is registered in any WHO-indexed registry; No registered SSPE study compares interferon routes; only 7 registered worldwide
trialsearch.who.intBusiness Recorder news report on favipiravir supply in Pakistansecondary
Favipiravir is locally obtainable in Pakistan
www.brecorder.com/news/40108891obtained at web.archive.org/web/20210725095041id_/https://www.brecorder.com/news/40108891
Direction 3 — remdesivir with spinal-fluid monitoring6
Schmitz KS, Handrejk K, Liepina L, et al. (corresponding de Vries RD), Journal of Virology 98(3):e01874-23, 2024full text
First 14-day course abolished myoclonic and tonic nocturnal seizures and restored speech; child died at 14 months; No resistance arose: recombinant virus carrying all patient L mutations was more remdesivir-sensitive; 20+ passages selected nothing
pmc.ncbi.nlm.nih.gov/articles/PMC10949486Gebara A, et al., Ocul Immunol Inflamm 2025;33(8):1873-1876, PMID 40531784abstract only
Adult antibody fall and rise is abstract-only, no values or assay, and confounded by concurrent immunoglobulin; Remdesivir-treated SSPE case published with no dose, route, duration or drug-level data
pubmed.ncbi.nlm.nih.gov/40531784Tempestilli M, et al., J Antimicrob Chemother 2020, DOI 10.1093/jac/dkaa239full text
Only human CSF active-metabolite measurement: 22.1 ng/mL GS-441524, one patient, day 7, 25.7% of plasma
pmc.ncbi.nlm.nih.gov/articles/PMC7337789Warren TK, et al., Nature 2016, DOI 10.1038/nature17180, Fig 2bfigure
Macaque brain 75 ng eqv/g at 4 h versus plasma 955, brain:plasma about 7.9%
pmc.ncbi.nlm.nih.gov/articles/PMC5551389Peart Akindele NA, Katamoni LD, Brockhurst J, … Porter DP, Griffin DE. “Effect of remdesivir post-exposure prophylaxis and treatment on pathogenesis of measles in rhesus macaques.” Sci Rep 2023;13:6463, PMID 37081035 (article number corrected from 6690)full text
Macaque RNA fell then rebounded; infectious virus continuously recoverable; clinical disease unimproved in both arms; Antibody titres and avidity maturation impaired only in prophylaxis arm, not in late-treatment arm
pmc.ncbi.nlm.nih.gov/articles/PMC10116456obtained at www.nature.com/articles/s41598-023-33572-7.pdfChan AKP, Liu L, Griffin DE, et al., JCI Insight 2025, DOI 10.1172/jci.insight.190740, PMID 40306326full text
Remdesivir prophylaxis limited measles-induced loss of antibody to non-measles pathogens; late treatment did not
pmc.ncbi.nlm.nih.gov/articles/PMC12220960obtained at insight.jci.org/articles/view/190740/files/pdf
Direction 4 — fusion blocker plus polymerase blocker10
US20230014151A1, USPTO publication images, FIG 39 / FIG 40 / FIG 41 (sheets 39, 40, 42 of 142)full text
Figure legends pair HRC4 with an unnamed polymerase inhibitor in human motor neurons, unquantified
patentimages.storage.googleapis.com/94/80/cd/6d400a95b0293b/US20230014151A1.pdfGurskaitė et al., Subacute Sclerosing Panencephalitis Outcomes Based on the Treatment Initiation Stage: A Systematic Literature Review, Neurologijos seminarai, 2024full text
80-case review: best-performing regimen was a three-drug combination; single-drug treatment had highest progression rates
www.journals.vu.lt/neurologijos_seminarai/article/view/38407obtained at doi.org/10.15388/NS.2024.28.100.4Yousaf I, Hannon WW, Donohue RC, et al. (Cattaneo group) 2023, PLoS Pathogens 19(12):e1011817, PMID 38127684full text
Polymerase the one gene with no reported variants, supplied in trans; cooperation a "possibility" not reconstructed in a living system; One SSPE brain held two diverse measles genome subpopulations across 15 specimens, with matrix and fusion mutations
pmc.ncbi.nlm.nih.gov/articles/PMC10735034Sakamoto K, Konami M, Kameda S, et al., PLoS Pathogens 19(7):e1011528, 2023, PMID 37494386full text
Polymerase activity sets how much F is made, not how fusogenic it is — two separable steps
journals.plos.org/plospathogens/article/figure/image?size=large&id=10.1371/journal.ppat.1011528.g004Hall CD, et al., Failure of cytarabine in progressive multifocal leukoencephalopathy associated with HIV infection (ACTG 243), N Engl J Med 1998 (institutional publication record)abstract only
Randomised trial of adding cytarabine to an active antiretroviral regimen in PML failed
profiles.wustl.edu/en/publications/failure-of-cytarabine-in-progressive-multifocal-leukoencephalopatobtained at europepmc.org/article/MED/9571254Cytarabine not effective in PML associated with AIDS, Clinician Reviews summary of the ACTG 243 trialfull text
Cytarabine arm of the PML randomised trial carried more haematological toxicity
Primary record located: ACTG 243 itself, Hall CD et al., N Engl J Med 1998.
www.clinician.com/articles/52869-cytarabine-not-effective-in-pml-associated-with-aidsobtained at pubmed.ncbi.nlm.nih.gov/9571254De Luca A, et al., Cidofovir in addition to antiretroviral treatment is not effective for AIDS-associated PML, AIDS 2008 (institutional publication record)abstract only
370-patient cohort: adding cidofovir to an active antiretroviral regimen did not improve PML outcome
publires.unicatt.it/it/publications/cidofovir-in-addition-to-antiretroviral-treatment-is-not-effectiv-7obtained at pubmed.ncbi.nlm.nih.gov/18753934Zeiler FA, Jackson AC, Critical Appraisal of the Milwaukee Protocol for Rabies: This Failed Approach Should Be Abandoned, Can J Neurol Scifull text
Milwaukee protocol bundled several agents, so no agent-level attribution was ever possible
www.cambridge.org/core/product/8A47C583B24B2B2E43248770F78CC35A/core-readerobtained at www.cambridge.org/core/services/aop-cambridge-core/content/view/8A47C583B24B2B2E43248770F78CC35A/S0317167115003315a.pdf/div-class-title-critical-appraisal-of-the-milwaukee-protocol-for-rabies-this-failed-approach-should-be-abandoned-div.pdfSmall-molecule polymerase inhibitor protects non-human primates from measles and reduces shedding, Nature Communications 12:5233, 2021, PMC8413292full text
The measles polymerase inhibitor class is dosed orally and acts systemically in primates
pmc.ncbi.nlm.nih.gov/articles/PMC8413292Lieber et al., Developmental candidate GHP-88310/EIDD-3608 with high tolerability and oral efficacy in measles and respiratory paramyxovirus models, Science Advances 12:eaef1594, 2026full text
Second measles polymerase candidate, GHP-88310, is also an oral systemic agent; GHP-88310 efficacy shown in respiratory and systemic measles models only; no brain data
pmc.ncbi.nlm.nih.gov/articles/PMC13196758
Direction 5 — RNA-targeting drugs8
Otaki M, Sada K, Kadoya H, Nagano-Fujii M, Hotta H 2006, Antiviral Research 70:105–111 (PMC7114231)full text
2006 siRNA against L (polymerase) mRNA inhibited wild-type measles and SSPE-Kobe-1; authors called it a clinical-trial candidate; siRNA against L mRNA inhibited both wild-type measles and SSPE Kobe-1 virus in 2006
www.ebi.ac.uk/europepmc/webservices/rest/PMC7114231/fullTextXMLZinke M, Kendl S, Singethan K, Fehrholz M, Reuter D, Rennick L, Herold MJ, Schneider-Schaulies J 2009, J Virol 83:9423–9431, PMID 19587038full text
2009 shRNAs against N, P and L cleared persistent measles infection from human neural cells; Authors' named obstacle: how to apply multiple siRNAs in vivo in the brain
pmc.ncbi.nlm.nih.gov/articles/PMC2738273Nusinersen (Spinraza) US prescribing information, DailyMed SPL setid dd70cd5f-b0fc-4ba4-a5ea-89a34778bd94, labelling revision 03/2026record
Intrathecal ASO dosing by lumbar puncture is licensed routine practice in paediatric patients, every four months
dailymed.nlm.nih.gov/dailymed/services/v2/spls/dd70cd5f-b0fc-4ba4-a5ea-89a34778bd94.xmlChiriboga CA, Swoboda KJ, Darras BT, et al. 2016, Neurology 86(10):890–897, PMID 26865511 (nusinersen phase 1 in children)full text
Intrathecal antisense dosing was performed in children with spinal muscular atrophy in a phase 1 study
pmc.ncbi.nlm.nih.gov/articles/PMC4782111Kim J, Hu C, Moufawad El Achkar C, et al. 2019, N Engl J Med 381:1644–1652, PMID 31597037 (milasen)full text
An ASO was designed, manufactured and dosed for one named child with a private mutation
pubmed.ncbi.nlm.nih.gov/31597037obtained at pmc.ncbi.nlm.nih.gov/articles/PMC6961983Regulatory Affairs Professionals Society, news report on FDA guidances for n-of-1 individualised ASO and gene therapiesfull text
A regulatory route exists for an oligonucleotide designed for a single named patient
Primary record located: the FDA draft guidance itself — nonbinding, and antisense only.
www.raps.org/resource/fda-rolls-out-more-guidance-on-n-of-1-gene-therapi.htmlobtained at www.fda.gov/media/154663/downloadPrProfile study of ION717 (intrathecal ASO) in prion disease, ClinicalTrials.gov NCT06153966, Phase 1/2, n=85 actual, active not recruitingrecord
Prion disease, an identical fatal progressive brain disease, has an intrathecal ASO trial underway
clinicaltrials.gov/study/NCT06153966Ionis Pharmaceuticals, Prion Disease Clinical Trial Handout, February 2024 (sponsor document; its own version line reads US-GEN-2300094 V1.0 02/24 — the “2024-10” in the URL is the host's upload folder, not a document date)record
Prion disease has a sponsor-run clinical programme built on the intrathecal oligonucleotide platform
Primary record located: the trial itself, NCT06153966 — one first-in-human Phase 1/2a, adults only.
neurology.ionis.com/sites/default/files/2024-10/Prion%20Disease%20Clinical%20Trial%20Handout.pdfobtained at clinicaltrials.gov/study/NCT06153966
What each group achieved10
SSPE Clinical Practice Guideline 2026, MHLW Prion and Slow-Virus Infection Research Group, March 2026 (CQ7-2, CQ11)full text
March 2026 graded guideline: inosine pranobex strongly recommended, intraventricular interferon weakly, ribavirin/triple/aprepitant/ketogenic no recommendation; Grade 1B inosine pranobex, 2C intraventricular interferon, "no recommendation" for intraventricular ribavirin
prion.umin.jp/guideline/pdf/guideline_SSPE_2026.pdfOkabe et al. 2024, Pediatr Infect Dis J, 2022 Japan nationwide SSPE survey, PMID 38134374abstract only
Ribavirin use at survey time fell 25.3% (2007) to 0% (2022); no new cases since 2017; Japanese 2022 nationwide survey: 37 surviving SSPE patients, no new case since 2017
Body not obtainable through fourteen routes; the abstract carries no ever-use figure, so the one an earlier draft quoted is withdrawn.
pubmed.ncbi.nlm.nih.gov/38134374Anlar B, Yalaz K, Ustaçelebi Ş. Turk J Pediatr 1988;30:85-92full text
Turkey's SSPE registry collected data on 402 patients seen 1975-1987 (Hacettepe and collaborating centres)
turkjpediatr.org/article/download/3876/4377/47591Öncel I, … Anlar B 2020, randomised double-blind placebo-controlled aprepitant trial in SSPE, PMID 32718528abstract only
Aprepitant RCT, 62 patients: no clinical difference at 6 or 12 months, better EEG, 27 withdrawals; Aprepitant trial's only positive signal was the 12-month EEG score, P=0.015
pubmed.ncbi.nlm.nih.gov/32718528Anlar B et al., 2004, long-term follow-up of interferon-treated SSPE patients, PubMed 15639700abstract only
Interferon-β1a 22 µg subcutaneously thrice weekly beat 60 µg intramuscularly weekly on survival and response; Subcutaneous interferon-beta1a three times weekly beat once-weekly dosing on survival and response
pubmed.ncbi.nlm.nih.gov/15639700George JA, et al. Ann Indian Acad Neurol 2025, PMC12192393full text
144 cases, intrathecal interferon 94.2%, good outcome 23.3%, mortality 48%, 34.4% decaying to 10%
pmc.ncbi.nlm.nih.gov/articles/PMC12192393Garg D, et al. Ann Indian Acad Neurol 2024 (nationwide neurologist survey), PMC11745250full text
266 Indian neurologists: 45.5% never advise interferon; 64.3% of patients follow up only occasionally
pmc.ncbi.nlm.nih.gov/articles/PMC11745250Lukban MB et al., Acta Medica Philippina 2022, prospective intraventricular ribavirin seriesfull text
Intraventricular ribavirin: 16 enrolled, 13 treated - 6 improved, 5 worsened, 5 Ommaya infections; Device infection in 5 of 16 enrolled (31%), with no ribavirin levels measured
Full text obtained late, and it reverses this report's earlier reading: CSF ribavirin WAS assayed by HPLC and used to set later doses.
actamedicaphilippina.upm.edu.ph/index.php/acta/article/view/5341obtained at actamedicaphilippina.upm.edu.ph/index.php/acta/article/download/5341/3562Ibrahim SH et al., 2023 review of SSPE management, PMC10406380full text
Twelve children, low-glycaemic-index diet: 7 of 12 had >50% jerk reduction; 25% died of pneumonia; Sole 2023 secondary review carrying rituximab n=1 and plasma exchange n=3 without benefit
pmc.ncbi.nlm.nih.gov/articles/PMC10406380Ren M, et al. Int J Mol Sci 2023;24(6):5851full text
RVG-nanoparticle favipiravir raised survival from 23% to 77% in a VSV-infected mouse model, not measles
pmc.ncbi.nlm.nih.gov/articles/PMC10058582
Three combinations available now9
Miyazaki K, Hashimoto K, Suyama K, et al. 2019, Pediatr Infect Dis J 38(5):496-499abstract only
Subcutaneous continuous-infusion pump held CSF ribavirin at target in 3 SSPE patients
pubmed.ncbi.nlm.nih.gov/30153227Tengattini F, Errichiello G, Varone A, Cinalli G, Ruggiero C. 2025, Acta Neurochir (Wien) 167:291 (PMC12596275)full text
Italy's continuous intraventricular interferon-alpha technique, 250,000 IU/day via implanted pump
pmc.ncbi.nlm.nih.gov/articles/PMC12596275obtained at link.springer.com/content/pdf/10.1007/s00701-025-06693-3.pdfCTRI/2009/091/000937, 'Intrathecal interferon alpha in SSPE', PI R K Garg, Lucknow, registered 2009 (WHO ICTRP record)record
India's lumbar intrathecal interferon route, 6 MIU weekly then monthly, no neurosurgery; Indian intrathecal interferon-alpha schedule: 6 MIU weekly for six months, then monthly
trialsearch.who.int/Trial2.aspx?TrialID=CTRI%2F2009%2F091%2F000937Ozgor B, Sahin MC, Bicakcioglu I, Yucel G, Karadag M, Gungor S. 2025, Viruses (PMC12846612)full text
Pan-immune inflammation value predicted death: AUC 0.87, cut-off 880, 82% sensitivity, 79% specificity
pmc.ncbi.nlm.nih.gov/articles/PMC12846612Trivedi R, Anuradha H, Agarwal A, Rathore RK, Prasad KN, Tripathi RP, Gupta RK. 2011, AJNR Am J Neuroradiol (PMID 21330388)full text
Splenial diffusion anisotropy tracked Jabbour clinical grade at correlation -0.91
pmc.ncbi.nlm.nih.gov/articles/PMC7965888Santoshkumar B, Radhakrishnan K. 1998, J Neurol Sci 154(1):83-88abstract only
CSF measles antibody titre progressively increased during an eight-year clinical remission
europepmc.org/article/MED/9543327Garg RK, Pandey S, Rizvi I, Singhal S. 2026, Encephalitis 6(4):91-102full text
Measles antibody positive in 63 of 77 (81.8%) long-term SSPE survivors
www.encephalitisjournal.org/journal/view.php?doi=10.47936%2Fencephalitis.2026.00108obtained at www.encephalitisjournal.org/upload/pdf/encephalitis-2026-00108.pdfNihei K 2002, Nationwide survey of ribavirin combination therapy in SSPE (1st report), FY2001 MHLW Slow-Virus Committee report pp.34–41full text
Composite endpoint in use: 3 of 6 improved clinically or by falling antibody; Somnolence 2 of 6, lip swelling 3 of 6, fever excluding one patient; all transient
mhlw-grants.niph.go.jp/system/files/2001/000182/200100822A/200100822A0003.pdfTomoda A, et al. 2003, Brain Dev 25(7):514-517abstract only
Same composite: 7 of 10 improved clinically or by decreased CSF measles antibody
pubmed.ncbi.nlm.nih.gov/13129596obtained at www.jstage.jst.go.jp/article/ojjscn1969/35/4/35_4_321/_article/-char/en
The graded tiers, A to D6
Gascon GG, international SSPE consortium randomised trial, 2003, PubMed 14736075abstract only
Only randomised trial of adding interferon to inosiplex: 34% versus 35% response, null
pubmed.ncbi.nlm.nih.gov/14736075Anlar B et al., 1997, alpha interferon plus inosiplex in SSPE, PubMed 9040751abstract only
Non-randomised Turkish series reporting short-term benefit from adding interferon to inosiplex
pubmed.ncbi.nlm.nih.gov/9040751Haddad FS, Risk WS, 1980, isoprinosine series with untreated comparison, PubMed 6154441abstract only
The 96-patient untreated comparison that failed to confirm isoprinosine benefit; 4 of 96 untreated improved
pubmed.ncbi.nlm.nih.gov/6154441Risk WS, Haddad FS, Arch Neurol 1979;36:610-614, 118 Middle East cases — treatment status is not stated anywhere in the retrievable record, so this is not an untreated cohortabstract only
Untreated survival half-life 1.8 years, 41% beyond two years, 5% substantial spontaneous improvement; The field's only untreated comparator: 118 cases, survival half-life 1.8 years, 41% beyond two years
Treatment status is not stated anywhere in the retrievable record, so this is not an untreated cohort.
pubmed.ncbi.nlm.nih.gov/485888Peyrl A et al., J Neurooncol 2014, paediatric intraventricular access device series, PubMed 25017328abstract only
Paediatric CSF-reservoir infection incidence, one series behind the quoted 1% to 35% range
pubmed.ncbi.nlm.nih.gov/25017328Gerber NU et al., Childs Nerv Syst 2015, paediatric ventricular access device seriesfull text
Paediatric ventricular-access-device infection incidence, the other series behind the 1% to 35% range
springerlink.bibliotecabuap.elogim.com/doi/10.1007/s00381-014-2561-xobtained at www.zora.uzh.ch/id/eprint/114858/1/Ommaya%20complications%20Gerber%20Manuscript%20Revised%202%20Clean.pdf
The groundwork that has to come first6
Campbell C, Levin S, Humphreys P, Walop W, Brannan R. BMC Pediatr 2005;5:47, Table 3full text
No validated continuous SSPE scale: NDI reproduced only in this review, 'poorly described and complicated to apply'; CORRECTION: all 20 NDI items are reproduced here, and this review calls it "poorly described and complicated to apply"
pmc.ncbi.nlm.nih.gov/articles/PMC1343569DuRant RH, Dyken PR, Swift AV 1982, J Pediatr 101:288-293 (NDI primary description)abstract only
Primary description of the NDI, the instrument SSPE scores rest on, could not be obtained
doi.org/10.1016/s0022-3476(82)80143-1obtained at europepmc.org/article/MED/6178812Leidy L, et al. 2025, J Patient Rep Outcomes 9:49, PMID 40327161 (MRC Prion Disease Rating Scale, TAPCJD)full text
Template for validating a fatal brain disease's scale: responsiveness, MIC 1-3 points, telephone-administered cohort
www.ncbi.nlm.nih.gov/pmc/articles/PMC12055732Palisoc MP, Ramones MS, Jamora RG 2026, Emerg Infect Dis 32(11):1793-1797, Results and Discussionfull text
Recommends CSF measles antibody in any child with progressive neurodegeneration and myoclonus, regardless of reported history; Measles history would have missed or delayed diagnosis in 5 of 20; CSF antibody 17/17 positive
wwwnc.cdc.gov/eid/article/32/11/26-1395Gavi VaccinesWork, 15 Oct 2026 (Dr Khalili, private facility, Peshawar)secondary
One Peshawar private facility registered 90 confirmed SSPE cases in the year to September 2026
www.gavi.org/vaccineswork/doctors-say-rare-fatal-measles-linked-condition-rising-pakistanÖncel I, Kravljanac R, Jaxybayeva A, Bakhtadze S, Wilmshurst J, Wirrell E, Anlar B, ICNC e-poster 624full text
International web registry recorded nine SSPE patients from four countries, February 2019 to February 2022
icnapedia.org/eposters/624obtained at icnapedia.org/eposters/media/attachments/2022/10/01/624.pdf
The registry and the regulatory route9
AJNR Am J Neuroradiol 2009;30(7):e99, correspondence exchange on NDI scoringfull text
NDI floor effect: scores cluster at 10-25 of 100 in Jabbour stage 1-2 patients
www.ajnr.org/content/ajnr/30/7/e99.full-text.pdfOncel I et al. 2020, aprepitant double-blind placebo-controlled SSPE trial, PMID 32718528full text
The "SSPE Scoring System" is this trial's secondary endpoint yet is cited in none of its 28 references
openaccess.marmara.edu.tr/entities/publication/b0fd569e-9852-408d-bfe5-daeee2fa6c90/fullHashimoto K & Hosoya M 2021, SSPE treatment review (Fukushima Medical University), PMC7830519full text
Fukushima's standing offer of consultation on diagnosis and of intraventricular ribavirin as research treatment
pmc.ncbi.nlm.nih.gov/articles/PMC7830519obtained at europepmc.org/articles/PMC7830519Gilboa 2026, published call for a global SSPE registry, PMID 42791058abstract only
The September 2026 call for a global SSPE registry that neutral-host routing is meant to resolve
pubmed.ncbi.nlm.nih.gov/42791058NIH NCATS Rare Diseases Registry Program (RaDaR), resource entry p=171record
A neutral international host already runs comparable rare-disease registry infrastructure
registries.ncats.nih.gov/?p=171Bio-Study Rules 2017, Drug Regulatory Authority of Pakistanrecord
A diet, interferon or ribavirin intervention protocol counts as a clinical trial under these Rules
www.dra.gov.pk/wp-content/uploads/2022/02/BiostudyRules2017-4.pdfDRAP, Guidelines to Conduct of Clinical Research on Therapeutic Goods in Pakistan, 3rd Edition, July 2025record
Interventional protocols need NBC approval plus DRAP Clinical Studies Committee approval and site licensing
www.dra.gov.pk/wp-content/uploads/2025/07/Guidelines-to-Conduct-of-Clinical-Research-on-Therapeutic-Goods-in-Pakistan-3rd-Edition.pdfProfit / Pakistan Today, 8 August 2025full text
August 2025 government exemption for hospital import of unregistered lifesaving drugs
Primary instrument located: SRO 1400(I)/2025, notified 1 August 2025, five years with effect from 22 January 2025.
profit.pakistantoday.com.pk/2025/08/08/government-approves-exemption-for-import-of-unregistered-lifesaving-drugs-for-hospitalsobtained at www.dra.gov.pk/wp-content/uploads/2025/08/Exemption-for-Import-of-Un-registered-Drugs-for-Use-in-Hospital-and-Institutions-01.08.2025.pdfGavi VaccinesWork, 28 October 2026secondary
Parent foundation of 123 members, over 100 patients; inosine pranobex from Dubai, about PKR 26,000 per 100 tablets
www.gavi.org/vaccineswork/pakistani-parents-children-deadly-measles-linked-brain-disease-find-mutual-support
What adversarial review overturned3
Aydin OF, Senbil N, Kuyucu N, Gürer YK 2003, J Child Neurol 18:104–108abstract only
Untreated improvement 0 of 13 versus 7 of 19 treated at one institution, P=0.036
pubmed.ncbi.nlm.nih.gov/12693776Gascon G et al. 1993, Brain Dev 15:346–355 (King Faisal Specialist Hospital, Riyadh)abstract only
1 of 11 untreated controls remitted versus 8 of 18 (44%) treated, same institution
pubmed.ncbi.nlm.nih.gov/7506498NCT05152771, Role of Ketogenic Diet in SSPE, Aga Khan University, ClinicalTrials.govrecord
The single SSPE study registered in the United States registry
clinicaltrials.gov/study/NCT05152771
How this list was built
Eleven parallel literature searches were run across the treatment evidence, the drug pipeline, and the global map of centres and registries. Each source was then retrieved independently, and anything that could not be obtained from its publisher was chased a second time through repository, archive and registry routes. Claims were checked against the retrieved document rather than against the citing review — a step that changed several conclusions, including some of our own earlier ones.
The full research document, with the graded evidence tables, is available to clinicians on request. 85 documents listed; last checked 15 November 2026.