# List of participation opportunities for clinical trials/large-scale -omics studies like the one by TruDiagnostic/Jessica Lasky-Su? **URL:** \ **Category:** General\ **Created:** [December 27, 2022, 10:35pm UTC](https://www.rapamycin.news/t/list-of-participation-opportunities-for-clinical-trials-large-scale-omics-studies-like-the-one-by-trudiagnostic-jessica-lasky-su/4661 "2022-12-27T22:35:06Z")\ **Posts on this page:** 4\ **Page:** 1
**Author:** ![AlexKChen](https://www.rapamycin.news/user_avatar/www.rapamycin.news/alexkchen/32/385_2.png) [@AlexKChen](https://www.rapamycin.news/u/AlexKChen)\ **Post date:** [December 27, 2022, 10:35pm UTC](https://www.rapamycin.news/t/list-of-participation-opportunities-for-clinical-trials-large-scale-omics-studies-like-the-one-by-trudiagnostic-jessica-lasky-su/4661/1 "2022-12-27T22:35:06Z")
Eg the one at [Development underway for a new generation, multi-omic biological age clock](https://www.prnewswire.com/news-releases/development-underway-for-a-new-generation-multi-omic-biological-age-clock-301566894.html) There are also ones by the Michael Snyder lab (only open to people in SF Bay area) [I have friends who volunteered] There’s the old “Guinea Pig Zero” (sources of info for human guinea pigs). Sadly the biggest problem is that most studies anonymize patient data SO hard that people can’t even get their own results back (this holds back progress) [even the data in the MIT BCS cognitive tests], and this demotivates me from partaking in most clinical trials. The money they pay is generally not that worth it. ---
**Author:** ![RapAdmin](https://www.rapamycin.news/user_avatar/www.rapamycin.news/rapadmin/32/377_2.png) [@RapAdmin](https://www.rapamycin.news/u/RapAdmin)\ **Post date:** [December 27, 2022, 10:40pm UTC](https://www.rapamycin.news/t/list-of-participation-opportunities-for-clinical-trials-large-scale-omics-studies-like-the-one-by-trudiagnostic-jessica-lasky-su/4661/2 "2022-12-27T22:40:14Z")
I am interested. We need to pull together a list of the participation opportunities. ---
**Author:** ![AlexKChen](https://www.rapamycin.news/user_avatar/www.rapamycin.news/alexkchen/32/385_2.png) [@AlexKChen](https://www.rapamycin.news/u/AlexKChen)\ **Post date:** [January 1, 2023, 4:39am UTC](https://www.rapamycin.news/t/list-of-participation-opportunities-for-clinical-trials-large-scale-omics-studies-like-the-one-by-trudiagnostic-jessica-lasky-su/4661/3 "2023-01-01T04:39:15Z")
[https://www.ars.usda.gov/northeast-area/beltsville-md-bhnrc/beltsville-human-nutrition-research-center/food-components-and-health-lab/](https://www.ars.usda.gov/northeast-area/beltsville-md-bhnrc/beltsville-human-nutrition-research-center/food-components-and-health-lab/) ---
**Author:** ![AlexKChen](https://www.rapamycin.news/user_avatar/www.rapamycin.news/alexkchen/32/385_2.png) [@AlexKChen](https://www.rapamycin.news/u/AlexKChen)\ **Post date:** [July 22, 2025, 9:57pm UTC](https://www.rapamycin.news/t/list-of-participation-opportunities-for-clinical-trials-large-scale-omics-studies-like-the-one-by-trudiagnostic-jessica-lasky-su/4661/4 "2025-07-22T21:57:14Z")
There are several overlapping reasons—regulatory, ethical, logistical, and scientific—for why most clinical trials do **not** return individual test results directly to participants: 1. **Regulatory & laboratory certification constraints** 2. **Ethical oversight & risk of harm or confusion** 3. **Logistical & resource burdens** 4. **Scientific validity & clinical actionability** 5. **Emerging best practices—but not yet universal** * * * **Bottom line:** It’s “your” data, but current U.S. rules and ethics guidelines prioritize **data validity** , **participant protection** , and **lab certification** over direct individual reporting—though many advocate for change so that, in the near future, you’ll routinely get your own trial results with appropriate context and support. * * * There are several overlapping reasons—regulatory, ethical, logistical, and scientific—for why most clinical trials do **not** return individual test results directly to participants: 1. **Regulatory & laboratory certification constraints** 2. **Ethical oversight & risk of harm or confusion** 3. **Logistical & resource burdens** 4. **Scientific validity & clinical actionability** 5. **Emerging best practices—but not yet universal** * * * **Bottom line:** It’s “your” data, but current U.S. rules and ethics guidelines prioritize **data validity** , **participant protection** , and **lab certification** over direct individual reporting—though many advocate for change so that, in the near future, you’ll routinely get your own trial results with appropriate context and support. ===== Most countries follow the ICH‑GCP model—and, like the US, they typically inhibit returning unvalidated raw research data to participants— **but there are some noteworthy regional differences** : * * * ### 🇪🇺 European Union Under **EU Clinical Trials Regulation (EU) 536/2014**, sponsors of all new Phase I–IV interventional trials **must** prepare a non‑technical (“lay”) summary of their results and **offer it** via the EMA’s CTIS portal. - **What you get:** A plain‑language synopsis of the trial’s objectives, design, participant characteristics, primary outcomes and safety findings—posted publicly and accessible to you. - **What you don’t get:** Your individual lab values or raw data files. Those remain part of the Clinical Study Report, submitted only to regulators. ([PMC](https://research.iu.edu/compliance/human-subjects/guidance/returning-research-results.html?utm_source=chatgpt.com "Returning Research Results: Guidance")) * * * ### 🇬🇧 United Kingdom New UK legislation (expected around 2025) will **require** CTIMP sponsors to **offer** participants their trial results (in lay form) within 12 months of study close. - **Status:** Still in pilot/draft guidance through the Health Research Authority, but once finalized, every trial must give participants a summary of the findings. ([PMC](https://irb.ucsf.edu/returning-research-results-participants?utm_source=chatgpt.com "Returning Research Results to Participants - UCSF IRB")) - **Still no raw data:** As in the EU, only validated, lay‑friendly summaries will be provided—individual participant datasets must remain under the trial’s data custodian. * * * ### 🇨🇦 Canada Canada’s **Tri‑Council Policy Statement (TCPS 2)** emphasizes confidentiality and, where possible, anonymization of data, which inherently limits returning raw or identifiable results to participants. - **Ethics boards (REBs)** can, at their discretion, encourage or require investigators to share individual findings—especially if clinically actionable—but there is **no blanket regulatory mandate** to return results. ([Panel on Research Ethics](https://www.ncbi.nlm.nih.gov/books/NBK525079/?utm_source=chatgpt.com "Principles for the Return of Individual Research Results - NCBI")) - **In practice:** Most Canadian trials follow ICH‑GCP: non‑CLIA (or non‑accredited) research labs don’t disclose unvalidated results, though some genomic or biomarker studies build in return‑of‑results pathways when ethically justified. * * * ### 🇦🇺 Australia The NHMRC’s **National Statement on Ethical Conduct in Human Research** (2023) says: > “While participants may have a strong interest in their own information, researchers are not expected to return raw genomic data to participants. … Return of individual findings depends on contextual relevance and clinical significance, and must be accompanied by confirmation in an accredited lab.” ([NHMRC](https://www.hhs.gov/ohrp/sachrp-committee/recommendations/attachment-b-return-individual-research-results/index.html?utm_source=chatgpt.com "Attachment B: Return of Individual Research Results | HHS.gov"), [NHMRC](https://ctti-clinicaltrials.org/wp-content/uploads/2021/06/CTTI_Patient_Perspectives_Meeting_Session3_Jessica_Scott_David_Leventhal.pdf?utm_source=chatgpt.com "[PDF] Return of Results Aggregate and Individual")) - **Take‑home:** Australian trials typically do **not** hand back raw blood‑test or imaging files, but many now build in a plan to return **clinically actionable** individual findings (e.g. a pathogenic genetic variant) with proper validation and counseling. * * * ### 🔍 Bottom line - **No country routinely sends you your unfiltered lab or imaging files** from a non‑accredited research lab. - **EU/UK** : You will get a lay‑summary of the trial’s overall results. - **Canada/Australia** : There’s no universal “return‑of‑results” requirement, but ethics guidelines and REBs may allow or even request individual findings—especially if they have direct health implications. If having your personal results is important to you, look for trials that explicitly include a **“return‑of‑results”** clause in the consent form (often seen in genetic or biomarker studies), and ask the study team during screening how and when they plan to share individual findings.