INDEX:

Other Websites

Here is a collection of websites by healthcare professionals, National MS Societies, and individual patient or group patients, where you can find information on AHSCT. Some of these websites focus broadly on MS, while others are dedicated specifically to AHSCT. These resources offer a mix of expert insights, official positions from MS Societies, and personal experiences.

Healthcare Professionals

& Insightful Websites

Below is a selection of websites authored by healthcare professionals, offering comprehensive insights on AHSCT. These sources provide expert perspectives and evidence-based information.

🔵 A Stem Cell Journey by Professor Richard K. Burt

Professor Richard K. Burt’s work on AHSCT has been groundbreaking, especially in the treatment of autoimmune diseases like MS.

Professor Burt has dedicated years of clinical research to validate the safety and efficacy of this treatment, offering new hope to patients with conditions previously considered untreatable. Click here for the website.

🔵 MS-Selfie by Professor Gavin Giovannoni

MS-Selfie is a newsletter written by Professor Gavin Giovannoni (Click here). He is a neurologist based in London, a world-renowned MS expert and researcher with over 30 years of experience in MS and related disorders.

MS-Selfie newsletters are published weekly. Most of the posts are available for free, while other content is accessible through a subscription plan. AHSCT is treated in several of newsletters.

🔵 Stichting MS in beeld by Bram Platel

This foundation was established by Bram Platel, the founder and chair of Stichting MS in Beeld (click here). As stated on the website, “I created this foundation at the end of 2018 to help people with MS by leveraging my background as both a scientist and an MS patient, in order to provide clear yet in-depth information about scientific insights into this challenging disease”.

The website motto is “Helps people with MS by communicating scientific insights in an accessible, but in-depth manner”.

This interesting foundation has several social media channels where you can gain a better understanding of MS: Facebook, Youtube, Linkedin and X.

🔵 Prof_drgeek by Stefania Unida

Stefania Unida, born on October 1, 1982, is a geoscientist and educator. She earned a PhD in microgeobiology in the Netherlands and worked in the energy sector in the UK for 12 years before becoming a teacher. Returning to Sardinia in 2022, she now teaches Science and Math in English in Cagliari (Italy). Diagnosed with MS in 2008, she has embraced life fully, launching the blog Flip Out 4 MS in 2014 and now sharing science and disability awareness on Instagram as Prof Dr Geek. Her efforts earned her the Donna di Sardegna 2024 award.
Passionate about travel, science, and inclusion, she promotes the power of sharing to inspire others: “Despite my condition, I am full of enthusiasm. As a scientist, I cannot help but dedicate myself to scientific outreach, and for now, I have chosen to do it as a personal vocation, entirely for free.”
🔵 GregoryAI by Bruno Amaral

GregoryAI is an open-source artificial intelligence platform (link here) designed to help researchers, clinicians, and patients stay up to date with the latest scientific studies. It indexes, filters, and summarizes research papers on MS, highlighting the most relevant ones in specific fields. The system can be customized to track specific keywords, deliver email updates, and organize information for different audiences.

The project was founded by Bruno Amaral, who leads the initiative together with a dedicated volunteer team.

Learn more about GregoryAI (link) on Bluesky and Mastodon.

Follow Bruno Amaral on social media: Bluesky and Mastodon.

🔵 Roberto Peluso

Roberto Peluso is an active science communicator dedicated to MS and related fields. His work serves as an essential bridge between complex medical research and the practical information needs of the MS community.
What sets his contribution apart is his communicative approach, which translates high-level clinical and therapeutic concepts into clear, accessible insights. This enables patients and caregivers to understand the nuances of the latest scientific developments without compromising technical accuracy or scientific integrity.

Visit his Facebook page here.

MS Societies

Following some of the MS Societies that have discussed AHSCT. The links lead to the sections where this topic is covered.

Patients

The following is a list of websites from individual patients or patient associations sharing their direct experiences with AHSCT.

On these websites, you can read firsthand accounts and suggestions, and sometimes even connect directly with patients. Please be cautious when evaluating these sources, as they generally feature more positive accounts than negative ones.

  • HSCT Warriors: “This non-profit organization has a mission to promote awareness of hematopoietic stem cell transplant [HSCT] for autoimmune diseases through education, outreach, advocacy, and personal connection. You can access their website (here).”
  • Sterkerdan MS: a Dutch website run by a patient association which promotes AHSCT.
  • AIMS (Auto Immune and Multiple Sclerosis): “The UK’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT”. AIMS official website here.
  • The Nerve of my MS by Natalie Busari.

🔗 For more, read about patients’ direct experiences.

Newsletters

As part of its educational activities, CureMS.net publishes a newsletter focused on a topic of particular interest. Each issue provides clear insights to help readers better understand the subject and is published in a lay-language version.

The full PDF can be downloaded for free, both in English and Italian. If you would like to receive the newsletter, please write to info@curems.net.

🇮🇹 For Italian newsletters:

🇬🇧 For English newsletters:

Helpful Definitions

This section presents study definitions ranked by their methodological strength—from highest to lowest power—consistent with the hierarchy of evidence, as opposed to an alphabetical arrangement.

Types of Studies

🔵Meta-analysis: While clinical trials produce new experimental evidence, meta-analyses summarize and integrate existing evidence. Definition according to “A Dictionary of Epidemiology” (Miguel Porta, 2014): “A statistical analysis of results. From separate studies, examining sources of differences in results among studies, and leading to a quantitative summary of the results if the results are judged sufficiently similar to support such synthesis.

Meta-analysis has a qualitative component (i.e., classification of studies according to predetermined characteristics capable of influencing results, such as study design, completeness and quality of data, absence of biases), and a quantitative component (i.e., extraction and analysis of the numerical information).”

🔵Systemic review: According to “A Dictionary of Epidemiology” (Miguel Porta, 2014), a systemic review “focus on peer-reviewed publications about a specific health problem and use rigorous, standardized methods for selecting and assessing articles. A systematic review differs from a meta-analysis in not including a quantitative summary of the results.”

🔵 RCTs: According to “A Dictionary of Epidemiology” (Miguel Porta, 2014), RCTs are “clinical-epidemiological experiment in which subjects are randomly allocated into groups, usually called test and control groups, to receive or not to receive a preventive or a therapeutic procedure or intervention. The results are assessed by comparison of rates of disease, death, recovery, or other appropriate outcome in the study groups. RCTs are generally regarded as the most scientifically rigorous method of hypothesis testing available in epidemiology and medicine.” RCTs are studies that provide robust evidence.

🔵 RCT terminated: In the course of scientific research, the publication of trial results is a crucial step in advancing our knowledge. However, not all trials reach the publication stage due to challenges in recruiting, data collection, unexpected outcomes, methodological issues, or shifts in research focus.

🔵 Observational prospectives: These studies follow a group of individuals over time to track their exposure to certain factors and health outcomes. Researchers analyze the relationship between exposures and outcomes to identify potential health risks.

🔵 Propensity score: Retrospective studies with propensity scores are observational studies that use statistical techniques to reduce bias and simulate some of the characteristics of RCTs. We must take keep in mind that propensity score presents limitations as outlined by Austin et al., 2021. “Propensity score methods allow one to remove the effects of confounding due to measured baseline covariates. They make no claim to remove the effects of confounding due to unmeasured covariates, and findings from observational studies must be interpreted with care given this potential for residual confounding (a limitation shared by regression adjustment)”. More on this topic here.

🔵 Observational retrospectives: “Retrospective cohort studies, also known as historical cohort studies, are carried out at the present time and look to the past to examine medical events or outcomes. In other words, a cohort of subjects selected based on exposure status is chosen at the present time, and outcome data (i.e. disease status, event status), which was measured in the past, are reconstructed for analysis.” (Song et al., 2010).

These studies are “observational” because the researchers do not intervene or alter the course of events; instead, they analyze past data to find correlations or outcomes.

🔵 Case-series: A definition of case series according to NIH “A group or series of case reports involving patients who were given similar treatment. Reports of case series usually contain detailed information about the individual patients. This includes demographic information (for example, age, gender, ethnic origin) and information on diagnosis, treatment, response to treatment, and follow-up after treatment”

🔵 Expert opinion: A definition according to the “European Centre for Disease Prevention and Control (ECDC)”: “Expert opinions are scientific views or comments by a group of designated experts based on a review of scientific evidence and/or expert opinion.”